Hello, my name is Sondra and I live in Jacksonville, Florida with my husband Edward and my three children, Jordan (age 10 ½) and identical twins Samantha and Maxine (age 9).

     All three of my children have Familial Dysautonomia, also known as "Riley Day Syndrome". We did not know anything about this disease until October 12, 2000. My son was a month from his eighth birthday and my twins were about 6 ½ years old.

     Keep in mind as you read about us and our children that they are doing very well, although they occasionally get sick and have some learning issues. They are very sweet, happy and don't seem to know that they are any different than anyone else.

     Familial Dysautonomia is a genetic disease, which is present from birth. It affects the nerve cells destined to control certain sensation and autonomic functions. Those sensory nerve cells which are most severely affected are those responsible for pain, heat perception, and taste. Autonomic nerve cells control bodily functions such as sweating, swallowing, regulation of blood pressure, and body temperature, and the ability to cry with tears.

     All the children with Familial Dysautonomia have the same basic problems - incomplete development of the nerve cells. As with other genetic disease, the degree to which a particular child is affected will vary, even within the same family.

     Familial Dysautonomia is a recessive genetic disease, which means that both parents carry the gene despite a lack of outward signs. It is most common amongst Jewish people of Eastern European ancestry. The disease may occur in more than one child in a family.

     Today, it is possible to be tested for Familial Dysautonomia before having children. There are currently two Jewish gene mutations known. There is also at least one non-Jewish gene mutation of Familial Dysautonomia that has been identified.

     There is no cure for Familial Dysautonomia, doctors and parents work together to treat the symptoms. It takes time and patience.

     When my children were young they did not suck their bottles very well, so we had to thicken the formula with rice cereal. They would often mis-swallow and get pneumonia or other respiratory infections. Today they still get sick sometimes, but not often. They take medication for asthma and it has helped them a great deal. My children now eat food by mouth, but some children with Familial Dysautonomia are never able to enjoy this simple pleasure and receive food and drink by a feeding tube.

     There is no cure for Familial Dysautonomia, doctors and parents work together to treat the symptoms. It takes time and patience.

     We have learned how to help our children with proper hydration (that is they drink a rice based oral electrolyte drink called Cera Lyte) and they use a medication called Florinef. They eat very well and take vitamins and enzymes so they can digest their food better. We avoid the heat in the summer- only going out to swim (never swim without an adult home to watch you) or into the car (with the air conditioner on) to go out. They go to school and enjoy many things.

     If you have any further questions, please feel free to write me via the DYNA main office.