Local family benefits from groundbreaking research on treatment for rare childhood seizure disorder
HARLEM, Ga. (WJBF) – It’s a rare disease that brings life-threatening consequences–but the chances of catching it are even more slim.
Tucker Lewis is a four-and-a-half-year-old from Harlem, who was diagnosed with Sturge-Weber Syndrome at just two weeks old.
It’s a rare neurovascular disease that is characterized by a facial birthmark, known as a “port-wine birthmark”.
The birthmark indicates that patients with the disease are at high risk for strokes and seizures.
The Lewis family was shocked to see that Tucker had the disease, knowing there were no problems with the pregnancy.
“Sturge-Weber Syndrome is not something you can detect in the womb, it’s not picked up by ultrasounds. So when we had him, I had him by C-section, and they told me he had a bruise on his face, ” said his mother, Megan Lewis.
Lewis began to research, and she quickly realized this was no normal bruise.
The family also found out Tucker had glaucoma, which is another symptom of Sturge-Weber Syndrome.
He was diagnosed with S-W-S during his first glaucoma appointment at two weeks old.
“The doctors just kind of handed him to me and said ‘Here you go. He might not walk, he might not talk,” said Lewis. “It’s such a rare disease that they don’t really know. It’s not often seen, so you kind of have to journey yourself through it.”
A week after that appointment, Tucker had his first eye surgery, followed by his second at six weeks old.
When Tucker was six months old, he and his family would begin a cycle of traveling to Atlanta for laser treatments.
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He’s had a total of 20 treatments, and at that time they would make the drive every 6-8 weeks.
Megan says it was a frightening time for her.
“It was very scary,” said Lewis. “I felt like I lost a lot of time as far as the newborn stage goes, because I was just digging down deep just to help my son, and to figure out what I could do for him to better his life.”
In an effort to help improve Tucker’s life, his mom took to Facebook to find others going through the exact same struggle.
After meeting a woman from California, she directed Megan to Dr. Anne Comi at the Kennedy Krieger Institute in Baltimore, Maryland.
Comi has been a key investigator in an initiative to not only help kids like Tucker, but change treatment approaches around the world.
“She’s actually the one who found the gene of Sturge-Weber Syndrome,” said Lewis. “She has released numerous articles and research on how to do presymptomatic treatment for these patients, to where we can keep the seizures and strokes away in order to preserve their life.”
According to the Kennedy Krieger Institute, almost 90% of infants with SWS experience a seizure before age two.
The early seizures can cause severe injury to the brain, and worse long-term outcome.
But in a collaboration between the institute and the Boston Children’s Hospital, researchers have found the presymptomatic treatment that can lower the chances of patients experiencing early seizures.
During the study, researchers looked at children with the disease who did not take the presymptomatic treatment, versus those who did.
Tucker was part of the study researchers conducted, and his parents started him on that treatment as part of the study.
For the treatment, Tucker would take one aspirin a day, along with a low dose of Trileptal to keep the seizures under control.
His mom and those from the institute say he is living proof of the positive effects of the discovery.
“It’s truly a blessing to be a part of. It’s given my son life from the doom and gloom that we were told when he was an infant to now. He’s running around, playing baseball, riding a bicycle, smart as a whip–typical 4-and-a-half-year-old boy. It’s changed his life,” said Lewis.
Though Tucker has had quite the journey throughout his short life, Megan says that today he is stroke and seizure free.
She adds that it’s the work of the institute–and her faith–that has gotten them to this point, and she is now taking on a role to encourage other moms like her.
“My biggest thing that I do now is to help other Sturge-Weber moms who are lost, and are afraid when holding a tiny new born and don’t know what to do,” said Lewis. “I guide them to Dr. Comi, let them know what Tucker has been through, and let them know that their kid is a warrior, and they are able to live a sustainable life.”
Lewis says Tucker’s 5th birthday is coming up this May.
His favorite baseball team is the Atlanta Braves, and for his birthday they plan to go to Baltimore to see them in action, and meeting the very doctors that have been a tremendous help.
For more information about Dr. Anne Comi and the research from the Kennedy Krieger Institute, you can find that article here.
For more about Boston Children’s Hospital, click here.
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