Getting Kids Back in the Game

On the outside, Damion Grimes Jr. looks like many energetic 11-year-olds. He enjoys family, friends, and sports – especially baseball and basketball. But underneath all of that, Damion has had to manage a chronic condition his entire life – epilepsy.

One day in January 2022, he had a seizure at his after-school program at the Kroc Center in South Bend. Damion was then airlifted to Riley Children’s Health for the third time in his life.

“Since Damion’s diagnosis when he was a baby, the Riley team has been managing and monitoring his care using EEGs and CAT scans,” his mom, LaTangela Bird, explained.

At just six months old, Damion was diagnosed with enlarged blood vessels gathered into clusters in his brain called cavernomas. Cavernomas can cause raspberry-like clusters of dilated blood vessels in the brain which may result in seizures. When these clusters burst and bleed they can cause neurological problems, including stroke and in rare occasions, death. While it isn’t known what causes cavernomas, in 20% of cases, including Damion’s, they are inherited.

Damion, Latangela, and Damion’s father, Damion Grimes Sr., spent several days at Riley Children’s following the January 2022 incident. The expert team at Riley, including pediatric neurologist Lisa Smith, M.D., had been monitoring his condition since birth. However, Damion’s clusters had grown and caused pressure on the surrounding brain, causing cavernoma-related epilepsy.

While at Riley, Damion and his family met with Riley pediatric neurosurgeon Jignesh Tailor, M.D., Ph.D., to discuss surgical options.

“We were nervous about it, but he made us feel at home and encouraged us to include Man-Man (Damion’s nickname) in the decision, too,” recalls Grimes Sr. “Dr. Tailor shared that if it was his son, he would move forward with the surgery.”

Surgery this complex, lasting about eight hours, required Dr. Tailor to make an opening in Damion’s skull to resect the cavernoma with the aid of brain mapping and neuronavigation. “We were able to perform recordings of the brain to remove all the abnormal areas driving the seizures in his brain while preserving all the important parts,” Dr. Tailor explains.

“The surgery was a success, and Damion is doing quite well.”

Dr. Tailor came to Riley in 2021 because of its unique environment and academic spirit. “It’s unusual for a surgeon to also be involved in research and have his own lab,” he says. “I take problems that we’re facing in the hospital and work on them in the lab to understand the science behind the diseases and find new treatment options.”

Nationally, there is a need for more funding to advance research in this area. According to the Epilepsy Foundation, epilepsy is underfunded, especially when it comes to translating research into new therapies.

Philanthropic support for research through Riley Children's Foundation is helping to reduce the distance from bench to bedside, enabling clinician-scientists like Dr. Tailor to conduct research that is immediately relevant to the patients they treat. And that level of care inspires more donors, including Damion’s parents.

“We own Riley license plates for all of our cars,” Damion’s dad says. “It’s the least I can do to give back to the place that has become like a home for us.”