Our son Schneur Gansburg was born in 2001. For the first six months he struggled with feeding and growth issues and at six months old, he was finally diagnosed with an Ashkenazic Jewish genetic disease by the name of Familial Dysautonomia (FD). This disease affects the autonomic nervous system, and therefore affects our son’s daily life. He struggled everyday with various health issues because of this disease. We were using different doctors to help him just get through the day – from retching, high fevers, g-tube feedings, using artificial tear drops a few times a day, vomiting, crises, pneumonia and excessive stays in the hospital. This all came to a halt when we met Dr. Berish Rubin. Dr. Rubin is a research doctor. My son Schneur can now attend a regular mainstream school and practically function like any other child. For years, just the thought of him sitting in class throughout the day was an unimaginable dream as the constant retching, sweating, nausea, and vomiting would overcome him through most of a “normal” day. For the past three years now that we follow Dr.Rubin’s regimen, giving our son Vitamin E tocotrienols – which raises the IKAP (now known as ELP1) which these kids are lacking – the green tea, Vitamin A and other supplements to help bring out the IKAP (now known as ELP1). We are really happy to say it’s come to the day where our son, even though he still retches a small amount in the morning, once he takes the tocotrienols, he’s able to eat breakfast which before he couldn’t even think of putting anything near his mouth without vomiting. And throughout the entire school day there’s no retching or nausea; he feels great! He could socialize and play with his friends without feeling sick. We were also able to introduce oral feedings into his schedule oppose to only g-tube feedings.Says Schneur, “I am so happy my parents brought Dr. Berish Rubin into my life. Before that I couldn’t even walk straight. I had to go everywhere in a stroller. Now I walk, run, and I even ride a two- wheel bike. I was so sick every day that I would go into crisis on a daily basis and constantly retch and vomit all day. We are very grateful that we came upon Dr. Berish Rubin who’s an amazing research doctor for Familial Dysautonomia and who will continue to do his research to help these children live the most normal functional life they possibly can have.
Chaim, Estie and Schneur Gansburg with siblings – Brooklyn, New York