Raelynn Gladhill has a rare disease called Batten’s disease. It has caused her already, at the age of five, to experience speech regression and limited mobility.
“We just thought it was a seizure disorder that we could control with medicine and then her seizures got worse and worse,” said her mom Morgan Myers.
Her mom is now trying to spread awareness of the genetic disease. Raelynn was diagnosed in March. And Morgan says she is trying to help her daughter live her best life.
“She’s the world to me,” said her grandpa Todd Myers.
Thursday night, with the help of her grandpa and the Hagerstown Suns, Raelynn got to throw out the first pitch with the support of the crowd cheering her on.
“She’s very happy regardless of how she feels. She is very happy all the time,” said Morgan.
Doctors say there is no cure right now. Research shows that children are expected to live through teenage life.
“Changes in the ability to walk is a big one and changes in the ability to move, do things, feed themselves,” said Allison Freeman, Physician Assistant in Hagerstown.
Raelynn’s family, along with the community, is working through their bucket list to make fulfilling memories for her while they still can.
“We were devastated at first, but we’re trying to live with it now, just like give her the best life we can until things start to get worse,” said Morgan.
“Just making memories now, aren’t we baby,” said Todd.
Doctors say over the next couple of years, it is possible that there could be more treatments available.