PINEVILLE, WV (WOAY) – Nine-year-old Seth Steele loves playing baseball, despite living with a rare brain disease called H-ABC Leukodystrophy.
“Well, I think overall Seth is a happy kid, but he just wants to be included. There’s a lot of things he is limited to.” Seth’s mom Jessica said.
Seth was recently able to play with a little league team in Oceana; and when he hit the ball, everyone cheered. It’s moments like this that his mom Jessica and his dad Kevin find so special.
“Just to see the smile on his face to be included in that. It was really nice.” Jessica said.
There are fewer than 100 individual cases of Leukodystrophy published in medical literature. Being so rare, researchers have yet to find a cure.
His mother spoke about how difficult things can be with their being no solution.
“Well, it’s hard. I think the biggest thing is that we would just like to ask to anybody that could make a small donation to the organizations to do do that Seth will have a better chance at life.”
Research shows that children with this condition don’t typically live past the age of five, however doctors say Seth’s condition isn’t currently progressing.
“We mostly take one day at a time and just make as many memories as possible, to savor those memories.”
Symptoms can range from involuntary muscular contractions, mobility changes, balance issues and speech difficulty.
Seth gets treated at Children’s Hospital of Philadelphia. If you would like to help fund research for the disease you can click here.
For more information about H-ABC Leukodystrophy, you can visit: https://www.h-abc.org/habc
