The Le Vine Family
Amber and Haley's fight against SSADH
An Open Letter: 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 to identify, finally, at Johns Hopkinsin Baltimore that they both had this, in 1996. At that time, they were identified as the fifth and sixth patients in the United States. Since then a total of about 350 SSADH people worldwide have been recognized. All our love,
Dear Friends and Supporters,
They are two very lively, bright, energetic young women, now 20 and 22, 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. The support of this organization and these organizations has enabled Amber and Haley to made some strides against the effects of SSADH.
In recent years Amber and Haley underwent extensive testing at the National Institute of Health in Washington, D.C. as part of grant to seek out medical ways to combat this disease. There is some hope that clinical trials of a useful drug may be undergoing sometime soon and that other answers are under way. 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 to hope for a better life to Amber and Haley and to all the other children and adults that suffer from SSADH and we can reach those goals and make a difference.
Jesse, Karen, Jacqui, Alison, Amber, and Haley
At the Toby Keith concert with Jacqui! Celebrating St. Patty's Day with Ali!
Donations can be made at the www.pndassoc.org
Go to Donations on the left hand side.
At the bottom of the donation page, under Additional Information, please write Wave of Hope under Donation Description and Le Vine family under PND Family Reference.
