3 Angels' Story

I've played many roles — Margaret, on The West Wing, Kelly Brown, on All My Children, Phoebe's annoyed smoking foil, on Friends, the seen-it-all psychiatrist in the movie, Dragon Wars, and plenty more — but nothing prepared me, or could have, to play this real life role as the mother of a wonderful baby boy, Lincoln B. Snyder, who was cruelly taken from this life by ACD. Without a doubt no role could ever matter more, as this Foundation has the potential to save other children, and all who love them, from the terrible suffering of this unspeakable disease.

ACD (Alveolar Capillary Dysplasia) is almost certainly a genetic disease of the lungs that kills infants. As someone said to me at the hospital, "Your son has a disease that has killed everyone ever diagnosed with it." It felt as if I had been hit by a train and I knew my life would never be the same again. I am now, along with my husband Craig, 100% committed to finding the gene(s) which cause ACD.

Lincoln is the 3rd child that my husband, Craig has lost to ACD. When Craig and his first wife lost their first child, Rebecca, they were told that ACD was a mutation and they were safe to have a second child. When Jonathan, their 2nd baby, died from ACD, the geneticists again offered their best theory. ACD must be a recessive condition, so both parents must carry the gene(s).

ACD has been thought to be very rare — with scarcely more than 114 cases documented in medical literature — so, the thought that it could ever happen to Craig with a different wife was completely out of the question. Having our healthy daughter, Shirley, seemed to confirm this. Then came Lincoln. Since our little Linc had ACD, his death has changed what scientists thought they knew about this disease. It now appears that ACD is caused by a dominant gene which only has to be carried by one parent. Therefore, many more children may be dying from it and we just don't know it. The only way to diagnose ACD is to put lung tissue under a microscope. Since no autopsy is performed on most infants who die, many cases are certainly being missed. For example, one researcher in New Zealand recently studied 7 infants who died from respiratory distress and found that 6 of the 7 deaths were caused by ACD!!! Bottom line, ACD strikes so suddenly—Lincoln seemed perfectly healthy and then became gravely ill overnight—that it could be responsible for some part of what were thought to be SIDS (Sudden Infant Death Syndrome) cases. My son may be the "Linc" to unlocking part of the mystery of SIDS.

Craig and I, along with leading researchers around the world, are excited at the possibility of ending this ghastly disease. We need your help. What we hope is that if we can raise enough money to fund the research, no one will ever again have to go through what we have.

PLEASE HELP US STOP ACD!

With much gratitude for all the love and support we have been shown throughout this horrible ordeal, and much hope to stop ACD forever,
NiCole Robinson