Family Fighting for Research for Son’s Rare Genetic Disorder

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Mom Sanam and Dad Ben share about their son Eli’s incredibly rare IRF2BPL diagnosis after noticing he had some developmental delays. With this diagnosis, they learned that their son will lose the ability to walk and talk and he will essentially become a prisoner in his own body. Eli’s pediatric neurologist Dr. Jane Tavyev Asher joins to share about Eli’s condition, one that he shares with only 20 kids in the world.

Meet One of 20 Kids in the World Diagnosed with Rare Disorder