An uneventful pregnancy led the Berkey family to believe that the birth of their second daughter would be normal. But Madelyn’s birth on July 25, 2015, was shortly followed by a series of seizures that left her parents, doctors and nurses at a loss for a cause. Tests later revealed that Madelyn suffered from an extremely rare genetic mutation of the SCN2A gene. So rare is this disorder that Madelyn is the only person in the world with this particular gene mutation. (Approximately 100 people have a similar, but not exact match, of that mutation.) It was a devastating diagnosis, and Laura and her husband, Brian, were told that Madelyn’s condition would not improve. The most anyone could do was make her as comfortable as possible.
Madelyn’s neurologist suggested Noah’s Children. “We didn’t know how they could help or what lay ahead,” said Brian, “but they did. Their attention to the smallest details meant the most to us, like spending time with Laura after a long day at the hospital so she had someone to talk to, going with us to doctors’ appointments to listen and interpret, or playing with our other daughter so we could take a break. They were a great resource and support system for us and taught us that it is okay to lean on others during hard times.” ...Read More