Emma was diagnosed with Alstrom Syndrome at 10 months old. It is extremely rare, with her being one in about 530 currently world-wide. It is a genetic syndrome with multi-organ involvement. Emma is Legally Blind, has Nystagmus, Retinal Dystrophy, Photodysphoria (extreme light sensitivity), Dilated Cardiomyopathy, and Hypotonia (low muscle tone), among some other things. Eventually, she will have blindness, hearing loss, Type 2 Diabetes and the list goes on.
In May 2013, there is an International Family Conference and Research Clinic being held in Plymouth, Massachusetts. With this being so rare, this is one of the few times that we have access to doctors that have seen Alstrom Syndrome, or access to other families that have children with Alstrom Syndrome.
Please help us raise money to attend this conference. This is a very rare opportunity for Emma and our family!
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- Kelly Metts
- Nick & Jane Bonvillain
- tiffany quick
- Seth & Cindy Kupferman
- BRINDA ERWIN
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