Is It Genetic? My 40-Year Journey of Misdiagnoses for My Son

• By: Ellen Feldman Arc of New York
• January 2nd, 2023
• co-occurring conditions, community support system, diagnosis, genes, genetic testing, incidence, rare genetic disorder, survey, SYNGAP1, testing, treatment trials, Winter 2023 Issue
• 2060    1

Forty years ago, my son Matthew was born. At the time of his birth, he had no apparent health issues. We began noticing that he wasn’t developing like a neuro-typical child when he wasn’t hitting milestones like rolling over. Since then, we have gone through countless tests and been given...