williams syndrome our story - baylor college of medicine · williams syndrome our story presented...
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Williams Syndrome
Our Story
Presented by:Tes Lopez-Rich and Lila Rich
History prior to diagnosis
Life with Lila pre diagnosis was a series of small struggles. While the issues did not stand out on their own, combined they were worrisome and brought to the attention of our pediatrician at Texas Children’s Katy.
• Unable to successfully breastfeed• Colic • Reaching of milestones delayed • Erratic sleep / no sleep pattern• Hypersensitive hearing• Wheezing (bronchiolitis) Mother’s intuition raises her hand more then once and answers sought.
Diagnosis and reaction• Initial visit with Texas Children’s Genetics Clinic
• Diagnosis of Williams Syndrome by Dr. Craigen
• Confirmation of Williams Syndrome by FISH test at 6 months
• Minimal information provided and outdated information posted on the internet
Treatment and Lifestyle
• Lila was not diagnosed with any cardiac or renal issues
• Contacted the Williams Syndrome Association for assistance
• Medical appointments set for all testing suggested by the American Academy of Pediatrics
The mission of the William Syndrome
Association is to advance the interests of
all individuals throughout their life span.
The WSA was formed in 1982 by, and for,
families of individuals with Williams
Syndrome.
The WSA creates a roadmap to help
navigate challenges – it includes answers
to common questions, a step-by-step
guide, information about WS clinics
across the country and best practices for
age appropriate interventions.
The WSA
Awareness month officially began
with “awareness week” in 2010
The fundraising success of
Awareness Month has launched the
WSA into a new era of funding
support to families and WS research
scientists. We are now able to
provide:
•$60,000 annually in scholarships
and medical assistance.
•$75,000 for convention
scholarships
•$500,000 annually for research
The WSA
South Texas Region
THANK YOUWSA : Williams-syndrome.org
Ph: 248-244-2229Tes Lopez-Rich, South Texas Region Chairperson
[email protected] 417 9418