I am doing a fundraiser through my business to help raise awareness for SJS. 20% of my commission will be going to the MDA to aid in research. The next part is courtesy of his mother. Giovanni is now seven years old and was diagnosed with Schwartz Jampel Syndrome at the age of two. Schwartz Jampel syndrome is a rare genetic disorder. Common characteristics of SJS include muscular stiffness (myotonia), skeletal dysplasia (dwarfism), and growth delays. Giovanni takes medications daily to relieve the muscular stiffness he lives with and medication to control his pain because his hips are deteriorating. Giovanni can still walk some unaided, but uses a walker around the house and a wheelchair for long distances. Giovanni has had 5 surgeries including his recent jaw distraction procedure. He is an amazing young man who always finds a way to smile even in the face of adversity. There is no cure for SJS and Giovannis type of SJS has never been documented before. Giovanni is followed by the best team of doctors at Nemours in Delaware and also sees doctors at the Childrens Hospital of Philadelphia. Giovanni is just a normal seven year old boy who loves WWE wrestling and John Cena. His favorite super heroes are Spider-Man and Superman. Giovanni loves to sing with his ukulele and paint. He has a great personality and is always joking around. Thank you for following his story and helping us raise awareness for Schwartz Jampel Syndrome and Our Son To place an order please go to: https://jewelryincandles/store/christinascandlesandaccessories/y/4778
Posted on: Fri, 24 Oct 2014 17:02:03 +0000
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