Tuesday, December 17th, 2019
'Great kid' Toby fights epilepsy
By Tom Stankard
Submitted Photo
Toby Van Tilburg, 7, gives a thumbs-up after surgery last week. He has been battling seizures for most of his life.
CELINA - Allison Van Tilburg will never forget the day six years ago in May when her son, Toby, had a seizure.
Van Tilburg was at work when she got the call and knew nothing about seizures. Luckily, her co-worker was a paramedic and they stopped what they were doing and raced to Van Tilburg's house to check on him.
Turns out, Toby had had a febrile seizure - a seizure in children caused by a spike in body temperature, often due to infection, according to the Mayo Clinic. The doctor said it likely would never happen again.
"That summer was probably one of the worst summers to have," she said.
One September night, Toby had another seizure and came out of it only to have two more within an hour.
Not knowing what to do, Van Tilburg recalled she and her husband, Jason, drove as fast as they could to Mercer County Community Hospital in Coldwater, where they were referred to Dayton Children's Hospital.
After meeting with a neurologist, they found Toby had a malformation in his right hippocampus gland. His parents were told he had only a 5% chance of the seizures continuing past the age of 6.
The seizures did not stop for Toby, however, and signs of epilepsy became noticeable when he was around 5 years old, Van Tilburg said. He continues to have seizures whenever his body temperature spikes.
"He would have them at the fair, birthday parties, sports and camping," she added.
They learned from a team of neurologists that Toby's hippocampus was growing, and the problem would only get worse without treatment. The doctors recommended surgery.
The Celina boy had surgery last week "to get the bad stuff removed and hopefully let this kid live a normal life," Van Tilburg said.
She started the #TeamToby Facebook page so people can follow how the first-grader is doing. Classmates and community members took pictures of themselves wearing purple and posted them on the page to show their support for their favorite "Epilepsy Warrior."
Vantilburg said the doctor is happy with how the surgery went despite taking longer than expected.
The 7-year-old has continued to show signs of recovery even though he encountered weakness on the left side of his body after surgery, Van Tilburg said.
Prayers from the community have been answered as her son on Friday was able to move part of his left thumb, Van Tilburg said.
"I want to tell everybody 'thank you.' It's nice to know that our small town is supporting him. It's just amazing," she said.
With a can-do attitude, Toby has conquered his physical therapy exercises and is expected to return home later this week, she added.
Celina Primary School employees look forward to seeing Toby again, principal Michelle Duncan said.
"We can't wait to have Toby back and healthy at school with us on a daily basis. We miss him daily. Any time a student is not at school we miss them. When they are gone for multiple days, you really miss them. It's like not having your family complete. We can't wait for our CPS family to be complete again," she added.
When describing Toby, she said "he is just a gem of a student."
"He's an all-around great kid and leader in the classroom," she added.
Submitted Photo
Toby Van Tilburg's first-grade classmates wear purple to show their support for his fight with seizures.
