If anyone would be interested in donating cookies cupcakes brownies etc to our Bowl For Ella night fundraiser at the Deer Park Bowl please message me Bowling for Ella Prader-Willi Syndrome (PWS) Date of Event: 06/28/2013 Time of Event: 07:00 pm Tickets Are $35 Deer Park Bowl 849 LONG ISLAND AVENUE DEER PARK, NY 11729 (631) 667-7750 My name is Lisa Pfeiffer and I am the PROUD cousin of Ella Margaret Capobianco, She is 1 years old and has Prader-Willi Syndrome. On June 28th 2013 we are hosting our first annual One Small Step fundraiser in honor of Ella to raise money for the Foundation For Prader-Willi Research. So spread the word come and show your support join the fun for a good cause. There will be 50/50, Door prizes, Raffles and even Pizza so come out and bowl with us lets BOW FOR ELLA!! PWS is a complex and rare genetic disorder occurring in about one out of every 15,000 births and is caused by the abnormal inactivation of a portion of chromosome 15. The symptoms of PWS are varied and dramatic, the most significant is insatiable hunger. Can you imagine being hungry all of the time, never being able to suppress your appetite? At only 4 days old, Ella was re-submitted back into in the hospital. She lay sleeping with shallow breathing under a heat lamp in just a tiny diaper and being fed through a tube, doctors told us this is how she may be for the rest of her life. Devastating, scared and seemingly hope- less we knew this couldn’t be. We took each day a day at a time and certainly as a blessing. Ella was strong enough to go home at 4 weeks old. Ella like all PWS babies was born with hypotonia (low muscle tone) which makes it hard for them to endure everyday activities and keep up with their milestones. But each and every day she works hard in physical and speech therapy and takes swimming lessons while also working with a nutritionist to keep a healthy weight. If you can’t join us please visit our website WWW.WALK4ELLA.COM Click on The Pfeiffer Family and make a donation today to Prader-Willi Research a dollar and a dream go a long way
Posted on: Tue, 18 Jun 2013 02:56:39 +0000
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