kathleen scott
TRANSCRIPT
-
7/31/2019 Kathleen Scott
1/2
STDPRSRT
USPostage
PAID
XXXXXX
Jacquelyn s story
For Congress
Compassionate Leadership - Proven Results
Tony Strickland
POBox1371
ThousandOaks,CA91358
Senatepanelapprovesnewborn-testing
billsoughtbyCamarillomotherByTimmHerdt~April18
th,2012
SACRAMENTOInJuly2002,RodandKathleenScott
ofCamarillobroughthometheirdaughter,Jacquelyn,from
thehospitalachildtheyandtheirdoctorsbelievedtobe
abeautiful,healthybaby.
Withintwoweeks,Jacquelynbegantosufferseizures
andcriedalmostincessantly.Ittookuntilnearlyherfirst
birthdayforadiagnosistobemade:Krabbedisease,a
nervoussystemdisorderthatoccursinaboutoneofevery
100,000babies.
Weweretoldthattherewasnothingwecoulddoforher,
KathleenScottsaid.
Jacquelynlivedtobe4,sufferingallthewhilefromwhat
hermotherdescribesasahorrible,hideousdiseasethat
causedhertolosehersight,hearingandabilitytoswallow
andtosufferfull-bodyspasms.
OnWednesday,Scotttoldherstorytomembersofthe
SenateHealthCommitteeandurgedthemtoapproveabill
thatwouldmandatethescreeningofnewbornsinCalifornia
fortwolysosomalstoragediseases,includingKrabbedisease.
PaidforbyStricklandforCongress2012
-
7/31/2019 Kathleen Scott
2/2
Dear Friend,
My name is Kathleen Scott and I am a middle
class parent. My husband and I have beenblessed with 3 beautiful children and a dog for
them to play with. Even if our circumstances are
not the same, we probably have a lot in common.
The one fact that might set us apart is the 2007
passing of our daughter Jacque from a genetic
disease that was not detected through Californias
required newborn screening program. Had Jacques
disease been caught at birth she could have had a life saving
procedure and she would be with us today.
As you can imagine, Jacques passing was tragic on so many levels for our family and shes missed daily.
To honor her passing, we have made it our priority to inform every parent of their rights when it comes
to newborn disease screening. To that end, we began to educate our local legislators on the importance of
newborn screening and why Jacques passing didnt have to happen.
One year ago, I called Senator Tony Stricklands office to tell them Jacques story and to ask for a meeting
with Tony. The first time I met Tony, he greeted me warmly and listened closely as I told him about
the process of newborn disease screening and that Jacques disease wasnt screened. After he asked a few
questions, Tony agreed that the disease Jacque passed from needed to be added to the California Newborn
Screening Panel and graciously agreed to author the bill to do so. And to make it even more special heoffered to name it after my Jacquelyn.
Just as he promised, Jacquelyns Bill was heard in the State Senate and passed out of the Senate Health
Committee on a bi-partisan vote. Though the final outcome of this bill is yet to be seen, Tonys ability to
work with his Democrat colleagues gives me hope that Jacquelyns Bill will become Jacquelyns Law and the
lives of countless newborns will be saved.
Although Im not politically savvy, Im smart enough to recognize a leader who keeps his word. Not only
did Tony keep his promise, he supports our mission of expanding newborn disease screening.
Now its my turn to support Tony. I asked Tony if I could write to tell you Jacques story and to give you a
sense of this fine mans heart. Tony didnt have to take on this cause and I can assure you that he didnt do
it for the headlines. He did it because he cares about improving the lives of those he serves. Thats why I
support Tony Strickland for Congress.
So when your mailbox becomes flooded with mailers sent by groups who care more about partisan election
results, I want you to remember this letter. My intent is to help elect Tony to Congress to fight for us. You
see, Tony didnt ask if I was a Republican or a Democrat, he asked how he could help.
We need men and women who will stand up for what is right and we especially need representatives we can
trust. It is my first-hand personal experience that we can trust Tony Strickland to simply do what is right
for California. We need leaders like Tony in Washington and Im asking you to join me in electing this very
fine man our Congressman.
Kathleen Scott
Mom and proud supporter of Tony Strickland for Congress