02/04/2026
Liam's mom, Tammy, sensed something was different with him from the start.
“He's our seventh child, and pregnancy with him felt different,” she said.
Those instincts were soon confirmed. Liam began having seizures immediately after birth.
“They’d last 20 to 30 minutes. It was terrifying,” Tammy said. “We searched for answers everywhere.”
It wasn’t until the family came to Helen DeVos Children’s Hospital that they finally received clarity. Liam was diagnosed with SCN8A, a rare neurological disorder that can cause severe epilepsy, developmental delays, and other complex medical challenges.
Dr. Seth DeVries is Liam’s neurologist. "He’s amazing, and I can’t say enough good things about him,” Tammy said.
Having a diagnosis changed everything. Tammy says it saved their family, giving Liam the opportunity to receive the specialized care he needed and deserved.
"I’ve loved seeing more of Liam’s personality emerge over the years, especially after making some key medication changes. This helped reveal a far more playful side of him, which is so much fun to see," Dr. DeVries said.
Today, Liam is nonverbal and has a cognitive level of a nine-month-old at 11 years old, but his care team continues to walk alongside him and his family every step of the way.
“I feel like the luckiest person in the world to be his mom. I would never change our lives. He’s our sunshine boy,” Tammy said.
Tammy also speaks to the power of community and support, something she says has made a meaningful difference for families like hers.
That spirit of connection is why we're co-hosting Rare Disease Day on Feb. 21. Patients, families, caregivers, medical professionals, researchers, and advocates are invited to gather to learn from one another, share experiences, and celebrate the perseverance of the rare disease community.
🦓🧬Register here:
https://docs.google.com/forms/d/e/1FAIpQLSe4cvU1ATBqIENi-wxJzrsGgvzJR9SfTfMhr2yA4GzOUIpmLA/viewform
