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.”
Brian added, “If you watch the news, much of it is terrible. But through this experience, we saw that there is also a lot of good in the world, like the doctors, nurses, and Noah’s Children, who have literally dedicated their lives to helping other people. Their support provided us with a more positive outlook even during the darkest of days.”
Madelyn was heavily medicated to control the seizures, but the Berkeys, including big sister McKenzie, 2, made the most of their time with Madelyn. “We held her, talked and sang to her, took photos, and always told her how much she was loved.” In that peaceful, loving environment, Madelyn quietly slipped away on Sept. 15, 2015.
The Berkeys have since participated in several Noah’s events and workshops. “Grief can be very isolating,” said Brian, “but we’ve been able to connect with others experiencing the same thing, and that’s brought us comfort.”
Although devastated by Madelyn’s passing, Laura knew she wanted to do something to honor her daughter and that would raise awareness of Noah’s Children. “I didn’t know Noah’s Children existed before our experience with them,” Laura said, “and I wanted the get the word out that this organization does great things for families going through a difficult time.”
So, despite her tremendous grief, Laura partnered with a childhood friend, Katie Larson, who sells Stella and Dot merchandise. Together they hosted a trunk show on November 21 in Laura’s home and called it “Muffins & Mimosas for Madelyn.” This holiday-season event raised $1,000, all of which was donated to Noah’s Children. Plus, as the hostess, Laura received trunk show rewards, worth an additional $500, which she used to purchase items for the annual gala’s silent auction.
“The event was a huge success,” said Laura. “More than that, it was therapeutic. It was a way for us to talk about her. Madelyn planted a lot of seeds, and we thought of this event as one of those seeds. To be such a small person who was not here very long, she impacted so many people. We received emails from family members that we don’t see often saying how much they thought about her. She brought our family and friends closer together. She taught everybody life lessons without ever saying a word. I know every mother is proud of their children, but I am so proud of Madelyn for what she accomplished in such a short time. She will always be part of our family.”