Dear Friends and Supporters,
Amber and Haley Le Vine are two young women who are diagnosed with SSADH (Succinic Semialdehyde Dehydrogenase Deficiency). It took seven years and five major hospitals and a final visit to Johns Hopkins in Baltimore, MD in 1996 to identify that they both Amber and Haley had this rare disorder. At that time, they were identified as the fifth and sixth patients in the United States. Since then a total of almost 400 SSADH people worldwide have been recognized.
They are two very lively, bright, energetic young women, now 23 and 25, who struggle with speech, gross motor and serious memory problems. Every day of their lives they have to deal with these very real limitations. As their family, we desperately want to find answers to enable to have lives closer to those like the rest of us enjoy and take for granted. It has been through the research and medical efforts of Dr. Geoff Chimsky, Dr. Phillip Pearl, Dr. Michael Gibson, and others that we have pursued answers and hope since then. The PND (Pediatric Neurotransmitter Disease) Assocation has been vital in assisting these efforts through conferences and with grants in spearheading the efforts to combat this disease. Now, we have our own organization, the SSADH Association, which makes it even easier to channel our efforts and funds, and to identify and bring SSADH families together. The support of these organizations has enabled Amber and Haley to made some strides against the effects of SSADH.
In recent years and twice over this past year Amber and Haley underwent extensive testing at the National Institute of Health in Washington, D.C. as part of a grant to seek out medical ways to combat this disease. NOW, we are currently involved in a clinical trial of SGS 742 that we have been waiting for some time, and that so much of our last fundraising effort was about. There isn't a big national voice for this small group of afflicted SSADH patients - many people have never even heard of this disease. Our goal is to change this and to get them the national attention and help they so deserve. Amber and Haley, and our family would appreciate anything you can do to help us. Through your contributions , we CAN raise money to support and maintain these efforts to give hope for a better life to Amber and Haley and to all the other children and adults that suffer from SSADH. WE CAN reach those goals and make a difference.
All our love,
Jesse, Karen, Jacqui, Alison, Amber, and Haley