Adasyn Roop

published 23 Nov 2018 by sandestinfound in Children's Stories category with 0 comments

Adasyn Roop was born with multiple health concerns, but the most debilitating is a rare eye disorder called Familial Exudative Vitreoretinopathy (FEVR) that causes the blood vessels in the back of her eye to hemorrhage. This disorder stopped the development of her right eye during pregnancy leaving her with a microphthalmic eye (small eye syndrome) and she is completely blind in that eye. She has already had two laser surgeries on her good eye and each one leaves scar tissue that reduces her peripheral vision in that eye.  Along with having to purchase a new prosthetic eye annually (as she grows), she also has to attend multiple therapies to help strengthen her fine motor skills, sensory issues, low muscle tone and developmental delays. Sandestin Foundation for Kids has been a part of Adasyn’s journey since 2017 and has followed her story closely. We were able to make an additional donation to help with her medical bills and her upcoming trip to Miami to see the only doctor in the US that can treat her eye condition.


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