Our child was diagnosed with Familial Dysautonomia (FD) at age two. That finding allowed us to move from searching for a diagnosis to beginning treatment and the feeling that there was some hope for the future. From age 2 to age 12 we followed the accepted protocol for the treatment of FD. Our family, including our child, was not satisfied with the side effects of the medications and how often it sidelined our child. When Dr. Rubin began his research in 2000, we welcomed another voice in the FD community that might shed more light on what was the root cause of FD. We could not change that our child had FD, but we knew that all those with FD should have more treatment options.
In the summer of 2003 we visited Dr. Rubin’s lab. It was the beginning of his testing that would lead to the identification of a substance, tyramine, in food that contributed to the continued breakdown in the health of those with FD. As Dr. Rubin questioned us about the foods our child ate, he hypothesized that there was a connection between food and the health of those with FD. It was anecdotal, but our child already didn’t eat many of the foods on the list of foods to avoid. We would discover as the list of tyramine-laden foods evolved, was that the times our child was in crises linked directly back to foods consumed. One by one, as we eliminated each of the foods linked to cause harm to those with FD, so too our child’s health improved. Not only did the time between crises increase, but the recovery from each crisis resolved quicker. First to disappear were the migraine headaches and the medication to control them. This would be repeated over and over again. For the past seven years our child has not been on any medications, except for the supplements discovered in Dr. Rubin’s lab and the occasional “normal” medications prescribed for typical illness like a sinus infection.
We did not want to raise a child to die, but to raise a child to grow to our child’s full potential and to live to contribute back to the world. For our child it has meant that with each new discovery in the Fordham lab that our child can dream bigger, with less support. There is never a day off from FD, but there is reason to feel hope and that there is a future that can include endless possibilities. For our child it has meant graduating high school with a full diploma, receiving college certificates in leadership and hospitality, and an AA degree. It means that our child has the opportunity to transfer to a four-year university, and live in the dorms. For our child the pride was in having more than one college acceptance to choose from. There is never a day off from FD for our child or our family, but with daily attention to food choices, hydration issues and daily supplements, our child has a chance to keep dreaming.
From the child who struggled to learn to walk, to talk, to eat by mouth, to read and write, to the young adult who can now make it through an hour tennis session and look forward to more, we thank Dr. Berish Rubin, Dr. Sylvia Anderson and their team for making a difference in the life of a child with FD.
Private Individual & Family