The Beginnings

My husband and I searched and worked very hard to find out what was wrong with our children. We created this NON-PROFIT charity to share information, educate adults, parents and doctors and to help fund research that would help those affected by various forms of Dysautonomia.

Many felt we would never solve the riddle, but after almost eight (8) years we did. With help from friends and extended family we found answers. As we searched for what was wrong with our children, we reached out to others and found help through alternative medicine, and other families. My children were diagnosed first with A-Typical Absence Seizures, then with a PKU disorder, an actual enzyme called DHPR was deficient.  Low Peterin levels were found, though the researcher could not figure out why the Peterin levels were low.   Later my three children were diagnosed with PDD (Pervasive Developemental Delay)  or  "A-Typical Autism".

In October, 2000 my children were diagnosed with a type of Dysautonomia called Familial Dysautonomia, also known as "Riley-Day Syndrome",  found on the gene 9q31. (for more genetic info see header, "About Dysautonomia).  If you wish to know more about Familail Dysautonomia please go to the header marked "Sharing Tree" and read our family's story.  If you wish to know more about other forms of Dysautonomia and Familial Dysautonomia then go to the header marked "About Dysautonomia". 

We also had to struggle to learn about the benefits that our children should be entitled to under the laws in the State of Florida for those with learning differences and those with developmental disabilities. From our home we reached local Representative Dick Kravitz, now Congresswoman, former Senator Debbie Wasserman-Schultz and Senator Nan Rich in South Florida. It took five (5) long years to educate our local legislators to finally pass a Medical Waiver for both adults and children affected by Familial Dysautonomia, also called "Riley-Day Syndrome".   By obtaining a Medical Waiver for those with Familial Dysautonomia they were able to gain access into Medicaid.  Should you wish to view our Medical Waiver please go to the header marked "Advocacy".  

We invite you, those affected by various Dysautonomias to join us, to share your stories and information. We invite both parents with young children, youths and adults to join us. Our sharing tree has many branches and we hope to share experiences and make significant differences.  We are an inclusive group and wish to include those with NON-Familial forms of Dysautonomia to join us.  It may surprise you to know that we also have some other forms of Dysautonomia that run through our family.  We would have never known to connect all the dots together until our children were diagnosed with Familial Dysautonomia.    Coincidence?  If you wish to share and have a discussion on topics related to Dysautonomia, please sign up for our "Forum". 

Please share our web site with friends and family so that all may know about Familial Dysautonomia and other forms of Dysautonomia.     Thank you for visting us, come again.  This web site is a work in progress and we will be adding much more information. 

Shoud you wish to make a donation, please mail your check payable to :