STARGARDT: One Family’s Genetic Journey Tied to Children’s Eye Health

Stargardt Disease is a rare genetic eye disease that happens when fatty material builds up on the macula, the small part of the retina - which is needed for sharp, central vision.  Vision loss usually starts in childhood, but some people don't start to lose their vision until they are adults (Stargardt Disease | National Eye Institute (nih.gov)

 

Today you will hear one family's journey into discovering their son, Gabriel, has Stargardt Disease.  Gabriel's Mom, Melissa Weathers, does a beautiful job walking us through a two-year timeline, trying to figure out what was happening with Gabriel's vision.

 

Melissa also highlights some of the amazing people and resources they've been introduced to through the past several years, as well as shares her experience transitioning Gabriel to public school and establishing an IEP with his new school.

 

Resources Mentioned:
Two Blind Brothers (https://twoblindbrothers.com/)
New View Oklahoma (https://nvoklahoma.org/)
OWL (Oklahomans Without Limits) Camp: (https://nvoklahoma.org/community-programs/owl-camps)
Foundation Fighting Blindness (https://www.fightingblindness.org/chapters)
Oklahoma Parents Center (https://www.okdrs.gov/guide/oklahoma-parents-center)
Bookshare (https://www.bookshare.org/cms/)
Dean McGee Eye Institute Pediatric Ophthalmology (https://dmei.org/services-specialties/pediatric-ophthalmology-strabismus/)
Dr. Michael Siatkowski (https://dmei.org/providers/r-michael-siatkowski/)

 

#Stargardt #ChildrensEyeHealth #OWLCamp #TwoBlindBrothers #NewViewOklahoma #FoundationFightingBlindness #OPC #OklahomaParentsCenter #ChildhoodMacularDegeneration #CCTVMagnifier #IEP #VisualImpairment