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$850 of $5,000
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16 donations

This fundraiser ended on 01/10/12

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The family and friends of Riley Baily are asking for your help to raise funds for this little angel.

Riley Peyton Bailey is a two & a half year old angel that has been diagnosed with Phelan-McDermid Syndrome. Her parents are Chisty Bailey Coleman and Jerry Coleman. Phelan-McDermid is an extremely rare syndrome. As a baby, Riley was sent to a neurologist and it was discovered she has slight-to-moderate cerebral palsy. Riley had actually suffered a stroke while still a fetus in her mother's womb. Even with that diagnosis, the neurologist was not satisfied so they continued to look further. "The neurologist kept saying she does have (cerebral palsy) and it may delay her milestones but it should not be affecting her as bad,". Right around Riley's second birthday, a visit to a geneticist brought the diagnosis of Phelan-McDermid Syndrome, which, according to Christy, is actually a deletion of chromosome 22. Funds raised are to be used for Riley and her family to attend a conference in July and also to get Riley a special needs dog. Cost to attend is $225 per person and does not include transportation, hotel or meals for the four-day event. The Coleman's have three more children and they feel it would be beneficial for them to attend the conference as well, but finances will be the deciding factor. The conference will provide new information, new therapies available, seminars for the siblings and opportunity to meet other families and gain more support. Riley has also just been diagnosed with seizures. The new medicine she is on, Trileptal, is not covered by insurance.
12/16/2011
Update: The findings on Rileys EEG were normal but had abnormal wave patterns due to the epileptic seizures are occuring deep in the brain so her seizure medicine was increased by double today and if spells and balance issues do not decrease, she will be put on Depakote.
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