As many of you know, our daughter Adelaide was diagnosed at 4 months with Williams Syndrome. Last May we attended the first annual WAYNE (PA) WALK FOR WILLIAMS and we were absolutely overwhelmed with the outpouring of support from our family and friends, old and new, near and far. May is WILLIAMS SYNDROME AWARENESS MONTH and once again we are planning on walking as #TEAMADELAIDE to spread the word about what Williams Syndrome is, and raise money for the Williams Syndrome Association (WSA), which has been an invaluable resource to us over the last 17 months. Last year we quintupled our initial goal and raised over $2500!!! The money raised helps the WSA put on programs for those with Williams Syndrome, helps less fortunate families with their medical expenses, provides funding for Williams Syndrome research, and helps to raises awareness.
Williams Syndrome is a rare genetic condition, present at birth, caused by a random deletion of ~25 genes on the long arm of chromosome 7. It is characterized by medical problems, including cardiovascular disease, developmental delays, and learning disabilities. These occur side by side with striking verbal abilities, highly social personalities and an affinity for music. WS affects 1 in 10,000 people worldwide – an estimated 20,000 to 30,000 people in the United States. (By contrast, Downs Syndrome affects about 1 in 800). It is known to occur equally in both males and females and in every culture. (For more information, visit http://www.williams-syndrome.org/ws)
The most important thing is that Adelaide is HEALTHY and HAPPY! She doesn't have the cardiovascular problems commonly associated with WS. She is thriving with her Physical, Occupational, and Speech Therapies. At 21 months, Adelaide is starting to take her first steps, feeding herself, and loves imitating her big sister (Words, Sneezes, Coughs, etc.). She has found her own voice, loves to shimmy to music whenever she hears it and thinks Tessa is the best comedian in the world. She lights up every room with her smiles – seriously – every room.
This year’s walk is taking place on Sunday, May 17th - once again at Wilson Farm Park in Wayne, PA. (Registration and welcome begin at 9am with a 10am Walk) #TEAMADELAIDE would love to have you join us for a fun morning walk as well as food, live music, travelling zoo, bounce house, face painting , and more!
Below is the link to #TEAMADELAIDE's support page where you can register to walk or make a donation to the WSA. Each donation counts as a walk registration, no matter the amount, so if you plan on walking (PLEASE DO!), please email Lisa (firstname.lastname@example.org) with your shirt sizes prior to APRIL 25! T-shirts will be distributed by the WSA at the Walk.
Youth: X-Small, Small, Medium, Large
Adult: Small, Medium, Large, XLarge, 2XLarge, 3XLarge
THANK YOU SO MUCH!
John, Lisa, Tessa & Adelaide