Ebb Therapeutics Fundraiser in honor of Noah Richard Van Schoick

Tickets

Free

May was a month that our CEO, Don Spence and his wife, Pat, were looking forward to for nine long months. May was the month that their first grandson, Noah Richard Van Schoick, would be welcomed into this world. Noah’s highly anticipated arrival finally happened on May 29th, 2019. Noah is the first child of Don & Pat’s daughter, Erin, and her husband Chris. This was, by far, one of the most joyous occasions for both the Spence and Van Schoick families.

Unfortunately, on May 31st, the family received some very difficult news about Noah. They learned that Noah has a genetic disorder called Galactosemia, which means that Noah cannot process galactose which is found in dairy products and even in mother’s milk. He will not be able to nurse and is now on a non-dairy prescription formula. Noah’s body cannot process lactose at all. Fortunately, the post birth genetic screening found the problem before he had much exposure. If left undetected, 75% of newborns are likely to die in the first 30 days. Even with strict dietary control, those with Galactosemia have a high chance of developmental disorders as the body produces galactose naturally and overtime it can impact organs including the brain. At this time, Noah seems to be doing well and enjoying all of the attention he is receiving from his loving parents and doting grandparents.

Galactosemia is a family of rare, genetic disorders that result from compromised ability to metabolize the sugar galactose. There is no known cure for Galactosemia at this time. It is estimated to affect 1 in every 50,000 individuals. Please join us in honoring Noah by donating to help educate, support and provide advocacy for those affected by Galactosemia.