newlife magazine - winter 2014

MagazineWinter 2014

Newlife

Joshua’s StoryWhen a child’s life is saved their treatment can sometimes leave them with long-term disabilities.

Newlife Research Centre Update

Turning fashion into equipment

Newlife Nurse saved my daughter’s life!

Pictured: Joshua with his new walker

Joshua is delighted with his new-found independence - and we have all cried over seeing him able to do so many more things thanks to the walking frame”Lisa, Joshua’s Mum

‘‘

Magazine ContentsJoshua’s story ......................................................................................................01

Newlife Nurse saved my daughter’s life! .................02

Fast tracked out of hospital .........................................................03

Just £3 per month helps a Nurse to help families and children ..............................................................................03

The best thing about my equipment is… ............04

New emergency service ..................................................................06

Sleeping safe .......................................................................................................07

Bedtime in a car seat ..............................................................................07

If you knew .............................................................................................................08

What’s in the box? .......................................................................................10

Medical research breakthroughs ........................................12

Newlife Birth Defects Research Centre......................13

Brighter Minds ..................................................................................................14

Newlife Equipment Grants

Joshua’s StoryWhen a child’s life is saved their treatment can sometimes leave them with long-term disabilities.

This is exactly what happened to young Joshua from Cheshire when he was just two years old.

He was diagnosed with a brain tumour and the only way to treat this was through invasive surgery followed by chemotherapy treatment. As a result he doesn’t have control of his joints and is unable to move around without some support.

Local services gave his mum Lisa a wheelchair to use for longer journeys. When she asked if he could have a specialist walking frame, so he could make the best of whatever abilities he has left, there was no money in the budget to make this possible. So Lisa turned to Newlife for help.

Before his surgery Joshua was a happy boy running around and able to do things that most children can do at that age. He was learning to be independent and, as every parent knows, watching your child grow is a precious time. At Newlife we believe that it’s vital that if a child has abilities they should be able to make the most of them. Equipment can often help a child do just that; so when Newlife funded the £1700 that it took to give Joshua a specialist walking frame, there were smiles all round.

Joshua got his walking frame earlier this year. It’s really stable and it can’t run away with him, so he is safe but he can be more

independent, he can play with his friends, he can even kick a football.

Lisa told us that his family have cried tears of joy watching Joshua joining in with his friends and for the first time in his life walk to school carrying his own little book bag; he can play games with his friends and is more active at school.

Newlife believes that it’s not what you can’t do that counts, it’s what you can do that really matters. We are committed to making sure more children like Joshua have the chance to be the very best they can be, develop independence and enjoy real quality of life for the future.

Right now there are as many as 250,000 disabled children without the essential equipment they so desperately need. Take a look at the interactive map on the Newlife website and help a child in your county.

Newlife Foundation. theMagazine. December2014 1

Success! U-turns on decisions .................................................16

What if I told you that... .....................................................................17

Reaching Out ......................................................................................................18

Turning fashion and homewares into disability equipment ..............................................................................19

Adopt Newlife as your Charity of the Year ...........20

How people like you are helping Children in counties across the UK ..................................22

Releasing and recycling equipment..............................24

Newlifeable gives football freedom for Kyle ............................................................................................25

How you can help a child today ...........................................26

2 Newlife Foundation. theMagazine. December2014

Newlife Nurse saved my daughter’s life!When mum Wendy spoke to a Newlife Nurse about her little girl Keeley, little did she know that this call would help save Keeley’s life.

Keeley has Cerebral Palsy, epilepsy and profound, extensive learning disabilities and on one particular day mum, Wendy was terrified for her daughter’s safety.

Keeley’s breathing problems were getting worse and worse and Wendy knew there was something wrong but no one would listen to her concerns - which were passed off as not serious - but Wendy remained convinced Keeley’s breathing was getting worse.

“Keeley was obviously struggling to breathe but nothing was being done and so I called Newlife and spoke to one of their nurses.”

Newlife Nurse Jane listened and

explained how Wendy could get someone to listen to her. Wendy used this information to her advantage, the health authority had to investigate. Keeley was admitted to hospital for tests.

The tests showed that Wendy was right. Keeley’s adenoids had re-grown and her airway was virtually closed. The doctors told Wendy “you nearly lost her”.

Today, Wendy says that she is very grateful for the support she received from Newlife. “That one piece of information and support saved my daughters life.”

Keeley is now safe and Newlife has since

supplied a specialist pushchair and loaned an emergency bed to support her care. Newlife’s intervention team are currently working with local statutory services, to ensure the long term provision of a specialist bed to keep Keeley sleeping safe and sound.

Newlife Nurses are independent, can see things from the outside and inform and support parents accordingly. They are not restricted by local priorities or policies. That is why the free Nurse Helpline is so important and why families really trust the confidential information and support they receive.

Keeley was obviously struggling to breathe but nothing was being done and so I called Newlife and spoke to one of their nurses.”‘‘


Fast tracked out of hospitalAlone and stuck in hospital, she couldn’t leave without the right equipment which could take months to be provided, so Alisha’s family turned to Newlife for immediate help.

Four year old Alisha Foceac has Cerebral Palsy which affects both her arms and legs. She also has very little movement and no control of her head.

Alisha suffers from chest infections that hospitalise her. On some occasions she requires oxygen therapy when her chest infections are more severe.

Alisha’s health and well-being is top of her parent’s list of priorities; the last thing they wanted to be worrying about was having to battle or face a long wait to get essential equipment for Alisha. Unfortunately this became a reality.

After one particular hospitalisation, Alisha needed a specialist buggy so that her parents could get her out of hospital and home safely. This needed to be a specialist pushchair that transported her oxygen cylinder while transporting her comfortably and free from pain.

Dad Daniel told Newlife that they had been

using a standard child pushchair to support Alisha, which wasn’t appropriate.

Alisha’s Cerebral Palsy meant she cried every time she went in the pushchair because she wasn’t comfortable.

So Alisha’s parents turned to Newlife. Alisha’s application was ‘fast tracked’, and the equipment delivered to the family’s home to coincide with Alisha’s discharge from hospital.

Daniel said: “This specialist piece of equipment from Newlife now gives Alisha the right postural support she needs. Alisha is much happier when we take her out, including to her many medical appointments.”

Newlife ensures that equipment is provided to disabled and terminally ill children and their families when they really need it. Equipment applications can be ‘fast tracked’ by a Newlife Nurse to meet immediate need, like in Alisha’s case so her parents can get her out and about in comfort.

This specialist piece of equipment from Newlife now gives Alisha the right postural support she needs. Alisha is much happier when we take

her out, including to her many medical appointments.”

Newlife fast tracked 116 equipment grant applications last year, ensuring that equipment reached children in a few days or weeks.

‘‘

As medicine is more able to respond to help more childhood conditions, save more babies born prematurely, treat children with cancers and fight infections and diseases, more little lives are saved.

That’s great news, but some estimates say that one in three will have a short or long-term disability or will be diagnosed as having a ‘life limiting’ condition. It is now estimated that there are 49,000 babies, children and teenagers who are terminally ill.

Many of our supporters say they help because if it was a child in their own family who needed equipment, they

would not want to see them suffer as they waited for help. They support Newlife so children don’t have to suffer.

When Sarah was told her little Katie could not receive any more treatment to save her life, she turned to a Newlife Nurse. We supplied the bed she needed to have Katie at home in the last few weeks of her life. Some days Sarah found it really hard to cope so she would pick up the phone and call the helpline. Speaking to a caring voice gave her the reassurance, support and strength she needed to care for her daughter and savour every precious second they had together.

Every family helped through Newlife

is supported by our fantastic nurses via our freephone helpline. For every family helped, it costs around £30.

For just £3 a month, you can make sure a disabled child and their family get that help.

Just £3 per month helps a Nurse to help families and children


The best thing about my equipment is…Equipment has the power to really change the lives of disabled and terminally ill children and their families. But don’t just take our word for it... See for yourself what the children have to say about the fantastic equipment that Newlife has provided for them.

Cody Tunnock, aged three, is from Bristol and needed a Safespace.“I love my sleepy tent.”

Lauren Johnston, aged 10, is from Tyne and Wear and needed a walker.“I love my walker because I can play with my little sister Ellie and we can go for walks together. I also get to play with my cousins and with my friends in the school yard.”

Please help Newlife to help more children like Cody, Lauren, Max, Lucy, Nicholas and Arina.


Max Phillips, aged six, is from Nuneaton and needed a lightweight manual wheelchair.“My wheelchair is awesome! I used it to get around the Think Tank in Birmingham all by myself for the first time. I am looking forward to using it for lots of days out.”

Lucy Baptist, aged 18, is from Lincoln and needed a hi-tech powered wheelchair.“When I went to see the X Factor tour I was able to be as tall as my friend - I love the extra bits on the powered wheelchair like the lights.”

Nicholas Cornwell, aged 14 and from Gateshead, needed a powered wheelchair.“My new chair is very comfortable and I love the bright Kermit the frog green colour and the Muppet wheel trims which make it stand out. Lots of people have stopped to say how lovely the chair is, and I am very proud of it.”

Arina Markova, aged 10, is from Worcestershire and needed a portable hoist.“The best thing about my hoist is that it was really easy to move around to get in and out of the pool when we were on holiday in Lanzarote. It was also really useful when I went on the year six residential trip to Culmington Manor in Shropshire. Even the teachers said that it was better than the tracking hoist at school.”


New emergency service

A specialist bed or cot can cost anything from £3k to £7k. Using a small suite of equipment bought with funds donated, we have made loans to children in real crisis situations. This bridges the gap while local statutory services arrange assessments and supply appropriate equipment.

That’s why Newlife steps in; so no child is trapped in hospital or at risk while waiting for vital equipment.

Once the loan bed is no longer required by the family, it is clinically cleaned, refurbished and made available for Newlife to use again, to help rescue the next child in need. So one bed or cot can help several desperate families. But there are more children who need this sort of help. We urgently need more beds and cots to help them.

Jayla’s Mum says...

...Staff at the Acorns hospice and my

community nurse told me about Newlife

Foundation for Disabled Children. I was amazed

and really pleased at how quickly the charity

responded to my call for help.

The bed for Jayla arrived very quickly.

It tilts, so she can be properly positioned to help prevent choking,

and rises up and down which helps me

with my own health problems -

I have severe arthritis and a degenerative

spine condition. It has made a huge difference

to our daily lives.”

‘‘

Newlife’s new Emergency Bed Loan service has gone from strength to strength.

If your company or club can help, please contact Newlife


That was the reality faced by Manchester couple Mark and Paula Denny, who say that the specialist equipment provided by Newlife Foundation has not just changed their lives - it has saved them.

Twins Patrick and Sonny had only ever slept for a maximum of four hours a night, waking regularly to cause damage to both themselves and the home. Paula said: “Patrick has cut his head open, they have tried to climb out of the windows, chewed wires, damaged radiators and ripped skirting boards off the walls. They just don’t understand danger like other children.”

Newlife provided a safe sleeping environment for Sonny through the Emergency Bed Loan service. The specialist bed provides a safe place where he can

sleep without risk of injury. Realising their desperate situation, Newlife’s dedicated equipment provider supplied a similar piece of equipment for Patrick.

The results were astounding.“We have been amazed at the difference

it has made to the boys. They are now relaxed at bedtime - they find the environments comforting – and for the first time in their lives they are sleeping around eight hours a night, which makes a tremendous difference to their behaviours and lets us sleep properly too. We have been astonished that a piece of equipment - not medication - can make such a huge difference to the boys’ welfare.”

Paula added: “Newlife hasn’t just changed our lives - it’s saved our lives.”

Little Ellie, aged three, has learning disabilities that lead to behavioural challenges. She simply didn’t see danger and appeared to have decreased sensitivity to pain so she would do some really dangerous things like wrap wires round her neck.

When she learned to climb out of her cot the nightmare started for Ellie’s mum Isabella never knowing what Ellie was doing, thinking of how she could hurt herself. The only thing Isabella could think of was to place Ellie in her car seat inside the cot because she couldn’t get out and hurt herself.

Isabella tried to get help from local statuatory services but they couldn’t help. So like thousands of families, she turned to our Newlife Nurses.

Ellie got her safe bed and now sleeping has improved. Isabella tells us she seems to be learning better - even the school has noticed a difference. And at last Isabella can sleep, knowing Ellie is safe.

Having the right equipment at the right time not only helps children to rest but helps their family sleep, to prepare for another day of dedicated caring.

Bedtime in a car seat! When a mum called us to say that the only safe place she could find for her little girl to sleep at night was in a car seat, Newlife Nurses knew they had to act quickly.

Sleeping safeImagine having to stay awake and watch over your five-year-old autistic twins to keep them safe each night.


Alfie, who has just turned two, has complex disabilities. He has Downs Syndrome, Cerebral Palsy and chronic lung disease. His lung condition is so serious that he requires oxygen 24 hours a day and is linked to a special monitor.

The reason for his disabilities is that Alfie was born prematurely and spent the first

six months of his life in intensive care; he was 16 months old before he was able to leave hospital.

His care clearly could not stop at hospital, and to enjoy family time together at their home, mum Tara and dad Robert needed help.

Tara was desperate for a special

needs buggy so that she could take Alfie outside with her. With his complex needs he needed a special buggy that would support him and all the necessary equipment that was keeping him alive, such as his oxygen cylinder.

Without a car and having to up pick Alfie’s sister from nursery; Tara was forced twice

About Alfie... Wanting to care for their frequently sick little boy at home but without the specialist equipment to do so, parents Tara and Robert turned to Newlife for urgent help.


If you knew… ...of a child who was terminally ill and needed help we believe that

you, like most people, would reach out and help that child. You may not know a child, but Newlife does.

The Just Can’t Wait service is for those children who simply don’t have the time to wait. We know that children, who are

terminally ill, often have less than Six months to live. They simply can’t wait weeks or months for statutory services to do an assessment, to agree to provide the equipment and

to finally provide it. They need their hoist, specialist buggy/wheelchair or specialist bed right now.

There are around 49,000 life limited children in the UK. Just Can’t Wait is a service

designed to respond to these urgent needs right now, so that families can

expect rather than hope that their equipment arrives in time to

make a real difference. Newlife makes sure

that equipment

arrives within just 72 hours of the initial application. Maybe it is a bed that is needed so that a child can spend

precious time at home, with the family, rather than in a hospice. Or it could be a specialist wheelchair or buggy that enables

families to enjoy days out, go on holiday, create lasting memories.

Every parent’s nightmare is to be told their child is terminally ill. Having to fight for vital equipment while you deal

with this is simply cruel. Most people don’t realise that terminally ill and life limited

children still have to face waits and delays. We know that frontline professionals try their very best to help individual

children. But local budgets are too low and systems are too slow to help many of these children, who need fast track help.

Newlife’s Just Can’t Wait service aims to deliver such equipment to families within 72 hours anywhere in the UK.

a day to put Alfie’s oxygen cylinder on her back, the monitor over her shoulder and then carry Alfie to and from nursery while holding his sister’s hand. This situation was simply unacceptable.

Everything changed when one day Tara saw a poster about Newlife at the hospital. She gave the Nurse helpline a call. The

buggy arrived within days of Tara talking to a Newlife Nurse and Tara was overwhelmed:

“I had got so used to hearing ‘no’ every time I asked about help with equipment so it has been brilliant to get this support at home. I don’t know what we would have done without Newlife’s help”

Newlife is also now providing a specialist

car seat for Alfie - so he can travel in safety to his regular medical appointments. Thanks to these two pieces of equipment Alfie and his family can enjoy quality family time together.

Tara said: “Alfie is terminally ill; we like to make the most of every day with him, because it could be our last.”

Alfie is terminally ill; we like to make the most of every day with him,

because it could be our last.”‘‘


What’s in the box?... It’s no secret that children love toys.

Toys are a great way to develop motor skills and learn. But what happens when children do not have the required skills to play with high street toys?

Parents with disabled children can’t just pop to their local toy store or supermarket to pick up an appropriate toy, as mum Sarah Moore is all too aware.

Her two-year-old son Rhys recently had his life transformed by a bright green, vibrating toy turtle. The toy came as part of a Play Therapy Pod that was loaned to the family by Newlife Foundation for Disabled Children.

Rhys is a little medical mystery and has an undiagnosed condition which affects his ability to walk and talk. He previously had a non-existent attention span which meant physiotherapy proved very difficult. However, that all changed when he met his new best friend - Victor the Vibrating Turtle.

Sarah said: “The turtle has been a revelation. Rhys likes to sit on it and finds the vibrations very relaxing. He will sit on it for quite a while allowing physiotherapy on his legs and work to improve his co-ordination and communication skills.

It has been absolutely amazing to watch his transformation,

his health professionals are so impressed with the difference the equipment has made.”

The innovative Play Therapy Pods, created by Newlife, each contain around £400 of sensory and developmental toys. They are delivered to families’ homes on three-month loans and are targeted at children with a range of complex tactile, visual, interactive and auditory needs. As with all Newlife services, there is no charge.

Seeing her one-year-old son Dougie enjoying himself playing was an incredibly special moment for mum Beth Atkinson.

Dougie has a neurological condition and requires ventilation support for his breathing. Beth said: “Dougie has extensive needs and we’ve found the contents of the boxes to be absolutely brilliant.

“Dougie is particularly motivated by lights and he has a visual impairment teacher who had been suggesting different toys - only to find we already have them through the Play Therapy Pods.

“He gets real enjoyment out of the toys and aids. Newlife has helped him enormously.”

‘‘We currently have a waiting list of families requesting a pod. The impact they have is huge.”Carrick Brown, Newlife Equipment Loan Services Manager.

‘‘ It has been absolutely amazing to watch his transformation, his health professionals are so impressed

with the difference the equipment has made.”Rhys’ mum, Sarah

‘‘His face literally lights up with anticipation when it arrives!” Tom’s mum, Sally

‘‘He gets real enjoyment out of the toys and aids. Newlife has helped him enormously.”

Dougie’s mum, Beth


Will you name a Pod? Each Play Therapy Pod costs around £400 to £500 to set up.

Big eyes and bright smiles light up Tom’s face when a Play Therapy Pod arrives at his home, according to mum Sally.

Tom has been diagnosed with conditions which affect his brain so has weak muscles and poor coordination.

“His face literally lights up with anticipation when it arrives,” mum said. “The equipment is always well chosen and usually there are a few items which Tom won’t put down. He even takes them to bed!

“It’s so important he gets a wide range of sensory experiences to help him reach his full potential. These boxes do that and give us the opportunity for quality play time together as a family.”

Newlife initially trialled the idea a couple of years ago and worked with a play specialist to develop the concept. It became clear that this service would be really popular.

Newlife Equipment Loan Services Manager Carrick Brown said: “In the last financial year we saw a 273 per cent rise in the number of families asking for a Play Therapy Pod so the demand is definitely out there. We currently have a waiting list of families requesting a pod. The impact they have is huge.”

Newlife now has 329 Play Therapy Pods to loan out to families

of disabled and terminally ill children across the UK. This is largely thanks to wonderful donors who have really got behind the service and recognise what a difference a pod can have;

The need was echoed by Laura Steel, whose two-year-old daughter Lily-Mai has a complex life limiting condition.

Laura said: “There are toy libraries in the area, but they don’t include things for disabled children like Lily. She is also very vulnerable to infection because she has no immune system so I would be worried that the toys hadn’t been properly sterilised. “I know when the specialist toys come from Newlife that everything will have been sterilised and thoroughly cleaned and the boxes come sealed.”

Play Therapy Pods provide specialist toys that can be therapeutic, developmental and enjoyed.

They have been created by Newlife because we believe early exposure to specialist equipment plays an important part in the development of children with all kinds of disabilities. At Newlife the needs of disabled and terminally ill children come first. Fun, specialist toys really do make a difference to the way children interact with each other and the world around them.

You can name and sponsor a new pod and have your own, your company’s or your club’s name included on a Pod plaque, so every family who benefits will know you really care. Pods have been sponsored in memory of loved ones and some people have asked for donations instead of gifts from family and friends for special occasions.

If you would like to name a Pod please call our Supporter Relations Team on 01543 462777 or email [email protected]


Newlife Research could lead to treatment for devastating defect

Breakthrough!Spinal Muscular Atrophy

Treatment!Growing a new ear

Research!Gives Hope to families

Newlife helping children today and tomorrow.

Spinal muscular atrophy (SMA) also known as “floppy baby syndrome” is the leading genetic cause of death in children.

It affects one in 6,000 births, but 50 per cent of those with the most severe form die before the age of two. The condition targets the body’s nerve cells, leaving babies with little or no control of their movements.

However, research at the University of Edinburgh funded by Newlife has found a plant chemical that could reduce the effects of this devastating condition. The plant pigment ‘Quercetin’, which amazingly is found in some fruits, vegetables herbs and grain, could help prevent the damage associated with SMA.

It was previously known that the condition damages nerves

but the research led by Dr Thomas Gillingwater at Edinburgh demonstrates that SMA sufferers also have unhealthy muscles. This is caused due to a low level of protein in the muscles but research shows that this can be treated, increasing the levels of protein in the muscle and targeting the genetic mutation directly.

Professor Gillingwater recognises how crucial this breakthrough could prove to be.

He said: “This is an important step that could one day improve quality of life for the babies affected by this condition - and their families. There is currently no cure for this kind of disorder so new treatments that can tackle the progression of the disease are urgently needed.”



Research funded by Newlife has developed a way to take stem cells from the abdomen and use these to grow new cartilage and tissue around the framework of an ear. Using a patients own cells means that the body won’t reject the transplant, preventing the need for anti-rejection drugs.

In the past, surgery to build new ears and noses has been invasive, painful and a long term surgical process. Being able to spare children this type of surgery in the future is a wonderful breakthrough.

Dr Patrizia Ferretti, who worked on the research at the Newlife Birth Defects Research Centre in London, hopes that in the future we will be able to use this technique to grow further similar structures which have the potential to help children and adults who suffer such a loss as a result of disease, injuries or accidents.

The team at the Newlife research centre are committed to developing this breakthrough further to improve the shape and strength of the ear to

help with recovery and reduce scarring. Investing in research is very important

to Newlife because while we are helping the children of today by giving them equipment, we must also care for the children of tomorrow by investing in medical research that investigates why conditions occur, looks into ways to manage them and ultimately find treatments and prevent conditions from occurring at all.

These conditions include syndromes, diseases, disorders and malformations which can disable and cut short precious lives. Birth defects are recognised to be the biggest threat to child health and research holds the key to combating this, as well as improving the health and quality of life for thousands of children. Across Europe it is believed that 1.7 million babies are born each year with a birth defect of some kind.

Newlife Foundation for Disabled Children is committed to research action

and has seen major breakthroughs made, as a direct result of its investment. Families who are today living with a child affected by such a condition hold on to the hope that medical research can ultimately provide help for their child. In many cases they wait daily for news that will help save their child’s life.

The Newlife Birth Defects Research Centre shares its outcomes with leading institutions across the world to ensure children everywhere can benefit from the advances made.

Dr Ferretti

Medical Research Breakthroughs... Imagine being born without an ear and the difficulties that this would cause. Groundbreaking research has the answer yet again. It could soon be possible to ‘grow’ ears using a patient’s own stem cells to avoid the need for anti rejection drugs.

Newlife Birth Defects Research CentreThe Newlife Birth Defects Research Centre in London is the only one of its kind in Europe, dedicated to the understanding, prevention and treatment of conditions which can affect babies both before and after they are born.


The chances are you know someone who has a child with severe learning disabilities. Whether we call it an SLD or mental handicap, whatever its name thousands of children each year are affected by this disability

Until recently we have known little about what causes severe learning disability. When the diagnosis was made parents were told that nothing could be done in the way of treatment other than providing special education. If there were other problems like epilepsy or congenital heart disease, there was treatment for this, but nothing to improve the mental handicap. In many cases parents have struggled singlehandedly to cope with their child’s severe learning disability and have known that their child will never grow up and become independent.

But time moves on... breakthroughs happen all the time. Yet severe learning disability remains one of the biggest challenges related to child health and disability.

That’s why Newlife is investing in a program of work called ‘Brighter Minds’. In 2014 we brought together 200 delegates including some of the leading paediatricians and researchers to explore what has been discovered and what might be done in the future to help these children and their families.

The session highlighted some of the work that Newlife Foundation has funded to identify the underlying genes that can lead to disability, when alterations occur. There is a world leading study being carried out in Cambridge which is carrying out high resolution genetic studies on up to 10,000 children with

Brighter Minds The home of the crown jewels was a fitting location to announce Newlife’s mission to combat severe learning difficulties (mental handicap).


learning disability from across the UK. We also heard about why severe learning difficulties are more common in boys and the new advances in autism and X linked mental handicap.

The remainder of the symposium specifically looked at the approaches to treatment - yes we did say treatment!! In short advances are being made right now in laboratories across the UK.

This was an exciting session where advances in new techniques such as stem cell transplantation and gene therapy aimed at replacing and repairing existing cells have had significant results in some of the more severe life limiting conditions such as adreno Leukodystrophy (a degenerative biochemical disorder of the brain).

The final session from Professor Sir Adrian Bird demonstrated how in Rett’s syndrome the discovery of the underlying genetic defect had led to dramatic treatment in the mouse with ongoing clinical trials starting in humans.

After the symposium the researchers met with supporters of the Newlife Foundation at a dinner in the Tower of London.

The ‘Brighter Minds’ event was the beginning of the story. Newlife announced its commitment to fund £1 million in research related to learning disability. So watch this space!!

Since its foundation Newlife has funded around 200 research projects and around one third of these involve

work on conditions with severe learning disabilities. Our work has led to the discovery of around 50 new

disease genes and this in turn has led to improved understanding and diagnosis of many disabilities.


Success!

U-turns on decisions

Many supporters ask why Newlife has to do the job of providing essential equipment, the job that local statutory services are supposed to be doing, with tax payers money...

The reasons are complex and both government reviews and several reports have all tried to get to the bottom of the problems, to no avail. These problems include things like:• Budgets set too low• Criteria for eligibility set too high• Excessively long assessment waiting

times to name but a few...Despite all the attempts to improve things,

the difficulties continue to negatively affect the lives of disabled, terminally ill children and their families; causing unnecessary pain and distress.

Newlife’s Intervention Service last year took on 100 cases; challenging local statutory services when they refused to make the provision of equipment that was so urgently and obviously needed.

In 96 cases the team successfully challenged the original ‘no’ decision. They succeeding in either getting full or part funding for the equipment needed. This leveraged over a quarter of a million pound worth of equipment that had previously been refused. Newlife continues to campaign to try and get an accurate picture of how many disabled children there are in the UK who are in real need. The current figure of 770,000 is decades old and out of date.

Normally families have to battle for months and even years to get the equipment they need. Now Newlife is showing that, if you are well informed, clear on the legal position and are willing to ask for a U-turn, things can and do change.


What if I told you that...Some things are hard to believe. In the UK today it is difficult to believe that some of our most vulnerable children and families when in need are turned away for the most unbelievable reasons.

The family of a terminally ill child, not expected to live past Christmas, was told that the urgently needed buggy could not be delivered until the end of January! Wheelchair services could not deliver this essential, specialist buggy in time so Newlife immediately stepped in and we arranged the delivery of the buggy needed for the next day.

Essential walking frames are labelled a ‘luxury’ by many local authorities despite being recommended by qualified professionals.This equipment should be provided to improve weight bearing, prevent joint deformity and aid digestion. However, if children are unlikely to ever walk independently, they are categorised by local authorities as “non- functional walkers” and refused the equipment. Newlife routinely funds this essential piece of equipment that can really change the lives of disabled children.

Only needing a little bit of sleep each night, one eight year old with autism preferred to bounce repeatedly on his bed. Despite the fact that he broke four beds, the local statutory service would not support the family by providing the specialist ‘tough’ bed that would keep him safe. Newlife provided the bed and the grateful parents can now sleep at night safe in the knowledge that their son cannot hurt himself.

A Local Authority refused to provide a walking frame to an 11 year old child who is a full time wheelchair user. The reason they gave for this is that in their opinion the child would never learn to walk unaided and therefore the walker would be for “recreational use” and was not essential.Newlife funded the walking frame for this child and he is now able to walk around freely. In addition to improving his posture, this has had a huge impact on his emotional wellbeing and he is starting to develop his independence more each day.

A young girl was refused a powered wheelchair assessment by her local wheelchair services, despite being completely reliant on a wheelchair for all her movement, because when poorly she has epileptic seizures. Despite the professionals assurances that she was both capable and safe she could not get this essential equipment.Newlife wrote to the authority responsible which has led to a service wide review of their policies. This young girl will now receive her assessment thanks to Newlife’s intervention.

Fact: These are just a few of the reasons why the budget holders in health care and local authorities refused to help. We are grateful to the many frontline professionals who support families via Newlife.


Reaching out Thanks to National Lottery funding, Newlife launches exciting new project in the West Midlands to help all families of disabled and terminally ill children.

Caring for a disabled child can be very challenging, carry a deep responsibility and leave parents feeling they are desperate and all alone.

Many families, when contacting Newlife’s nurse helpline (freephone 0800 902 0095) tell our nurses that they feel cut off from the world, from people who can help because looking after and caring for their disabled child takes all their time and energy.

For black and minority ethnic (BME) families, the risk is even greater. Last year, a Newlife study identified that 88%

of BME families caring for a disabled child are at great risk of becoming isolated from the wider community.

Simple reasons for this include; a lack of confidence in speaking English, anxiety about speaking to people from different cultures who could help and a general lack of awareness about what services are available.

Unfortunately, this means that many disabled children living within BME and hard to reach communities are going without vital support and equipment they need to help keep them safe and free from pain.

To address this, Newlife has embarked on a two-year project entitled “Reaching Out to Isolated Communities in the West Midlands”.

This trial will focus on the West Midlands because; outside of London, the West Midlands is the most ethnically diverse region in the UK.

Boosted by a £90k grant by Big Lottery Fund, the project involves an outreach programme which will target communities to raise awareness of Newlife and our services and break down the barriers that are preventing families from accessing the support they need.

The outreach programme is being delivered in partnership with Include Me Too, a national charity aiming to create equal opportunities and participation for BME families caring for a disabled child.

If you would like to find out more about this project, please contact project co-ordinator, Lindsey Smith, either via email on [email protected] or by phone on 07583 188 067.


Turning fashion and homewares into disability equipmentNo, it’s not magic, but it is wonderful how companies committed to protecting the environment are helping thousands of disabled children across the UK.

However careful a company is there will, on occasion, be items which either do not sell or are retuned by the customer. Instead of dumping or incinerating these, some leading UK and European companies commit this stock and - with a little Newlife magic - their goods are used to raise funds to buy the essential equipment children urgently need to help them in their everyday lives.

So it’s quite possible that an unwanted lamp earned the funds that became part of a wheelchair, or maybe a mattress when sold helped provide a walking aid, and perhaps a coat with the button missing became part of a communications aid so a child with no speech could have a voice. We often wonder how many trousers and tops does it take to buy a therapeutic bed to relieve pain and it’s amazing to think that broken and tangled costume jewellery can become the wherewithal to create a life changing Play Therapy Pod.

Fundraising income goes up and down and Newlife competes with many high profile fundraising campaigns but the children we serve are no less deserving of help. Many of the children we support need help urgently and that’s why the donations from these major retail companies in the UK and Europe are so important. It’s the goods they donate that provide the dependable income which means we can act quickly. If a baby is stuck in hospital and can’t come home because a special cot is needed, they can’t wait for us to fundraise - the money is needed there and then. And that’s why these corporate stock donations are so vital. They mean we can commit to helping babies, children and young adults, often on the same day an application is made.

So next time you go shopping, or a news programme discusses retailers, spare a thought for those companies which support Newlife and disabled and terminally ill children by providing stock.


Adopt Newlife as your Charity of the Year Question: What do Central England Co-operative, HSBC, Lions Club, Marriott Hotels, The Morgan Foundation and One Stop Stores Ltd all have in common?Answer: They are all large successful organisations that have helped raise vital funds for Newlife in recent years.Charity of the Year - a great way to have fun and raise vital funds to help Newlife.

One of the most successful ways leading organisations help charities like Newlife is through Charity of the Year adoptions. Simply put, a company agrees that for a period of usually one or two years all funds raised will go to that charity. Once agreed, the staff and customers then really get behind fundraising efforts with spectacular results. This can develop team building across the organisation and also show customers that it cares for something other than profits.

How do companies raise funds?Take a look at some of the fab ways that

people have raised funds for Newlife through the photos over the page. For example, Central England Co-operative have over the last two years raised more than £700k; an incredible effort. Fundraising activities have included sporting challenges like the London Marathon, Three Peaks Challenge and skydiving, cake and craft sales, musical and panto performances, quiz nights and coffee mornings - as well as a range of in-store activities like community fun days, sponsored head shaves, flower arranging demonstrations and raffles.

How can I help Newlife with Charity of the Year?

Usually companies will have a set time when they choose their next Charity of the Year. It is fairly common for companies to ask their staff during the first stage of the process who they would like to nominate as a Charity of the Year. If you work for a company which routinely does this or know someone that does, then please do put forward Newlife.

Newlife is delighted to be working with The Morgan Foundation as their adopted Charity of the Year for 2014.

The Morgan Foundation, created in 2001 by businessman Steve Morgan O.B.E - who is founder of Redrow plc, chairman of the Bridgemere Group of companies and Wolverhampton Wanderers FC - hosted a fabulous golf day, gala dinner and charity auction in Cheshire in May, all in the name of Newlife.

The Foundation was delighted that

Newlife could guarantee that all monies raised will be restricted to help buy essential specialist equipment for disabled and terminally ill children inside the remit area of the foundation which covers North Wales, Merseyside, West Cheshire, North Shropshire and Wolverhampton.

Steve focuses on working with charities and organisations which are helping disabled and disadvantaged children and their families in particular.

He said: “Newlife has demonstrated an entrepreneurial and business like approach to addressing the difficulties which families with a disabled child face. The practical help which it offers via the provision of equipment and, in particular, the Just Can’t Wait scheme are services which the Morgan Foundation has identified as crucial to families. They are exactly what The Morgan Foundation wishes to support.”

Passion, dedication and get up and go Robert Plant, a great live band, a fantastic venue, amazing food and close to £500k raised for Newlife! What more can you ask from a golf day and gala ball?


Why should I put Newlife forward?Disability can affect anyone, suddenly

and without any reason. It can have devastating effects on individuals and families. We believe that equipment such as wheelchairs, specialist buggies, car seats, beds and communication aids can have the power to make a real impact on the lives of disabled children and their families. After all, it’s not what you can’t do that matters; provide the right piece of equipment and they will show you what can be done.

What does restricted income mean?Also, have you ever asked the

question to the charity you support - where does my money go? Newlife promises to give you the power to tell us how and where you want to spend your funds. If you want to help a child in your county or a company wants to help disabled and terminally ill children in their trading area, then we will promise 100% of your money will be spent in this way. This is quite rare and something that we are proud to offer.

Feel that you can help? Want more information?Please contact Newlife on (freephone) 0800 988 4640

Central England Co-operative (formely the Midlands Co-operative Society) has extended its charity partnership with Newlife until the end of 2014, thanks to its overwhelming success.

Since the partnership began in May 2012, the hard work, enthusiasm and dedication of Co-operative colleagues and customers have helped Newlife buy essential equipment for over 300 disabled and terminally ill children.

Burton on Trent mum Rebecca, whose nine year old daughter Hannah received a £2,800 specially adapted buggy, summed up the partnership perfectly. She said: “Central England Co-operative’s support of Newlife is having a big impact on young lives across the region and we are grateful for their contribution to our family.”

They (Newlife) are exactly what The

Morgan Foundation wishes to support.”

Steve Morgan

‘‘

Central England Co-operative extends partnership


How people like you are helping Children in counties across the UK

What Nicola did…In County Durham, 13-year-old Nicola Clarke hit on the idea of making bespoke gifts and cards, selling them to friends and family.

She even organised a coffee morning and jewellery sale at her local church. To date, she has raised over a staggering £1,500. Nicola was inspired to help after attending Brownies with a disabled friend. She said: “There are many children with a disability who need help with everyday tasks.”

What Pam did…Pam Ling, from Walton on Thames in Surrey, is one of a growing band of supporters who host ‘Sparkle Parties’ in aid of Newlife, selling jewellery provided by us through our recycling and retail social enterprise. Pam has raised a breathtaking £9,000 this way. She previously supported Newlife as mayoral secretary to Elmbridge councillor James Vickers, who raised £90,000 for us during his mayoral year in office.

What soldier Stephen did…G l a s g o w - b a s e d soldier Stephen Connor, aged 37, took on the sporting challenge of the 2014 London Marathon and the Highland Fling to raise a

breathtaking £2,930. Stephen’s fantastic efforts helped to provide a lightweight manual wheelchair with an electrical add-on driver for 11-year-old Scottish girl Shannon Reiss.

What Ellie did… Nine-year-old Ellie Rowcliffe, from Staffordshire, took on a triathlon challenge to raise a brilliant £330 this summer. Ellie swam 100metres, cycled four kilometres and ran 1.3 kilometres - all in a time of just 30 minutes and 39 seconds. Ellie said: “I was very tired after the triathlon but very proud. Thank you to everyone who supported me - I couldn’t have done it without you!”

What Cai did…Twelve-year-old Cai Evans from Dartford in Kent set up a Krispy Kreme donut stand at his school - Haberdashers’ Aske’s Crayford Academy - to raise a fantastic £187 as a way of saying ‘thank you’ to Newlife for providing his four-year-old sister Mia with a specialist bed. Cai said: “My sister will now sleep safe and sound in her new bed and I hope the money I’ve raised can help another child like her.”

What the Stone Lions club did…A fabulous Flowers and Fashions fundraising event held at Staffordshire stately home Sandon Hall and organised by Stone Lions Club raised a fantastic £1,977 to help provide specialist seating for 11-year-old Cameron Key from Stoke on Trent, to help protect his posture.

What the 3Bs Rally club did …A Hampshire motorcycle club responded to an appeal for help to fund a wheelchair for Alton teenager Charlie Stubbs, who has

a rare neurological condition - and raised a huge £1,500 at a rally of custom and classic vehicles. The 3Bs Rally Club invited Charlie, aged 17, and his family along to the event. Mum Tina Stubbs said: “Everyone was so welcoming - a really lovely bunch of people. Both Charlie and his younger brother, who has a diagnosis of autism, had a great time; everyone was really understanding of their conditions.”

What Shepshed & District Funeral service did…‘Hits From The Jukebox’ - performed by members of Shepshed & District Funeral Service - raised over £2,000 to help children in Leicestershire and was attended by a host of local VIPs. That made everyone at Newlife want to ‘Shout’!!!

What Swimming instructor Emma did…A junior swimathon at Stafford Leisure Centre raised more than £1,600 to help disabled and terminally ill children in the county - An incredible effort by all. The event involved 33 children, aged six to eight, and was organised by swimming instructor Emma Hawley as a ‘thank you’ to Newlife Foundation for Disabled Children which provided a specialist bed for her daughter Jessica, aged two. Jessica’s sister Natalie, aged six, was one of the swimmers - she personally raised £689.


What Max did…Families supported by Newlife Foundation also like to give something back. Six-year-old Max Phillips from Nuneaton in Warwickshire was the star of the Newlife Santa Dash in December 2013, using the new lightweight wheelchair he had received just the day before. Mum Michelle Phillips said: “We knew we were getting a grant for the wheelchair and it is important for Max to understand that it’s not just about taking, but saying thank you too.” Despite having had the wheelchair for less than 24 hours before the event, Max - who has Spina Bifida – displayed amazing control of the equipment and raised a fantastic £300.

We knew we were getting a grant for the wheelchair and it is important for Max to understand that it’s not just about taking but saying thank you too.”Max’s mum, Michelle

How people like you are helping Children in counties across the UK

What Wendy did…Wendy Thorpe and her fellow craft group members from Warboys in Cambridgeshire have raised over £1,700, making and selling jewellery, and cards, knitted goods and collectibles; a fantastic result! This has helped to fund equipment for five children in their county. Wendy said: “Knowing we are raising money to help children in our local community is a huge incentive to our members - and the people who support our events.”

What Patrick, David and Alex did...Three colleagues from international wheelchair manufacturers Permobil took a leap of faith to help fund a wheelchair for a local four-year-old boy. Patrick Jager, David Headford and Alex Gibson all took part in a skydive from 10,000ft to raise a breathtaking £2,000. Permobil product rehabilitation specialist David Headford said: “We provide wheelchairs for Newlife Foundation and so we know all about the charitable work they do. We wanted to do our bit to help and thought that a skydive would be a little bit more exciting than a sponsored walk or a fundraising barbecue.”

Join in and help a child!


Releasing and recycling equipment for UK childrenSarah in the North East needs a special wheelchair. The local authority provider says no, they have no budget. Yet sitting on a shelf, gathering dust, in a council in the South West, is the very same item of equipment!Question? Why can’t the council in the South West release the wheelchair to help the child in the North East?

No one knows the answer, but the fact is it hasn’t been happening. This means that children who could be helped are left stranded.

Newlife’s Head of Operations Stephen Morgan says: “The children in need are children of the UK, our children, so why not release these under-used items to help a child in urgent need of this essential equipment - it doesn’t make any sense.”

Newlife was told by one of the UK’s leading equipment providers who work with such local authorities

every day, that they estimate there are around £90 million of this under-used/redundant children’s specialist disability equipment stuck in council warehouses. We were astounded and pledged to try and change this.

The number of disabled children in the UK continues to rise which is largely thanks to medical advances. Children are now routinely surviving serious illness, cancers and birth defects and as a direct result more equipment is needed to help these children in the short or long term. Statutory services,

however, are in most areas in the UK making less funds available to buy the equipment to meet the needs of disabled children.

Individual families and some local authorities are donating equipment to Newlife that is no longer required. Newlife works with a partner organisation to refurbish and clean this equipment to MHRA standards before offering it back to families of disabled children who urgently need this equipment across the UK.

This is a pilot project but in the first few months we have released equipment with an estimated purchased value of around £300K. It only cost Newlife £53,675 and has so far helped 84 children.

•Theprojecthasbeenacclaimedbyfamiliesandprofessionalsandmorelocalauthorities are participating rather then writing off equipment to landfill sites.

•Thisinnovativeserviceiscalled‘Newlifeable’andequipmentisuploadedontoaspecial website that families and professionals can view; www.newlifeable.co.uk

newlifeablestrapline which is here will go here and here


The walker gives him another view of the world instead of just sitting or standing and it’s good for his muscles, his morale and his self esteem - and gives him another avenue to be cheeky with! I’m trying to give him as much opportunity as possible and this is just life changing for Kyle.”

Carine, Kyle’s Mum

‘‘

Like most six-year-olds Kyle loves to get into every little bit of naughtiness he can possibly get away with, and thanks to a walker from Newlifeable, he’s getting away with more than ever!

Diagnosed with Athetoid Quadriplegic Cerebral Palsy, Kyle is a bright little boy who lives life as normally

as his condition allows him to and he has a variety of equipment to help him achieve this. For him the walker’s greatest gift is the simple pleasure of getting out into the garden to kick a ball around with his brother whenever he feels like it.

Newlifeable gives Football freedom for Kyle


How you can help a child todayBecome a Local Friend of Newlife. We need volunteers in all counties across the UK to help us raise awareness and funds. All income generated will be used to help disabled and terminally ill children in your county. Local people helping local children.

Nominate Newlife for support or adoption in your company, club or pub. Our local and national fundraisers will be happy to help you.

Take on a challenge, whether it’s trekking, running, walking, parachute jumping or a wacky endeavour of your own choice. We will supply you with resources and support. Speak to our team as they have lots of opportunities for you to take part in across the UK.

Make a New Years resolution. Lose weight, give up smoking, get fit, conquer a fear, achieve a goal. This New Years Eve resolve to make a change, get sponsored and you could to change a child’s life forever.

Give a little each month. Just £3 a month can help our Nurses, support families through our free national Newlife helpline. So why not set up a direct debit? This is easy and simple, just give us a call and help families in real need across the UK.

Remember a special someone. If you want to mark the memory of someone special, why not make a gift on their birthday or at Christmas? Then, in their name, we will use the funds to help a child in real need in your county of choice.

Choose to give not receive. Special birthday coming up? Maybe you don’t really need/want gifts at Christmas; why not ask friends and family to donate to help a child instead? Our fundraising team can hep you to do this and we will tell you how your special day helped a special child.

Name a Pod. Take on a personal mission to fund a Newlife Play therapy pod in 2016. Your name will be on a plaque inside the Pod, so every child and family helped will know you care. A pod can help six children in its two year lifetime. £400 fills a Pod; £600 fills the pod and covers its running costs including free delivery to the child, for two years.

Do the small stuff that really counts - raffles (we can supply prizes), coffee mornings, bring and buys (very good for those unwanted Christmas gifts), hold a fun quiz or beetle drive, BBQ or Tombola, hold a sparkle party (ask Newlife staff about this jewellery opportunity) and much more.

Don’t forget - every penny counts because Newlife guarantees that 100% of your funds raised or gift(s) donated will help a child in real need.


0883THERAadnewlifeNov14v2.indd 1 10/11/2014 11:48


Klearside™ RainbowThe Klearside™ Rainbow has been developed in collaboration

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To arrange your demonstration, call us now on

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tel: 01706 816274 www.safespaces.co.uk

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We believe in a 24 hour approach to the handling, treating and positioning of an individual. Our product range includes mobility products, wheelchairs, toileting, bathing, showering and our award winning P Pod beanbag styled seating system. SOS seating services are available throughout the UK.


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Beds & Mattresses

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Book your demonstration and assessment today by calling our customer service team directly

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The new and fully featured Kudu tilt in space wheelchair offers unparalleled stability and

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Co-operative Energy are proudto work in association with

Newlife Foundation forDisabled Children

WE WILL DONATE £25WHEN YOU SWITCHTO US BY CALLING

0800 093 7511QUOTING “NEWLIFE”

Mathew used his communication aid to write using Makaton

to thank Newlife and our

supporters for his

powered wheelchair.

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Freephone: 0800 902 0095 . Email: [email protected]

Newlife Foundation for Disabled Children, Newlife Centre, Hemlock Way, Cannock, Staffordshire WS11 7GF

facebook.com/newlifefoundation twitter.com/@newlifecharity youtube.com/NewlifeFoundation

www.newlifecharity.co.uk Registered Charity Number: 1001817 in England & Wales. Newlife Trading Ltd. Company Registration Number: 2833372

newlife magazine - winter 2014

Documents

surgery joshua

childs life

daughters life

specialist walking frame

young joshua

walking framelisa

equipmentnewlife nurse

longterm disabilities