HASTINGS, Neb. (KSNB) - What would have been a normal softball jamboree became much more than that. Hastings and Gretna softball decided to raise money for Drew Sillman who is faced with the rare Batten Disease.
The Sillman family is working to fight off their son Drew's rare Batten Disease. (KSNB)
“Most doctors haven't even really heard of the disease so we just have to kind of be our advocate for him,” Drew’s Mom Cara Sillman said.
The disease is described as being like ALS, Alzheimers, and Parkinsons all in one. Eight-year-old Drew was diagnosed shortly after he turned six and became blind that same year.
His family started the non-profit Batten 4 Drew to raise money for research. There is currently no treatment or cure.
Drew has made a close bond with his brother's baseball coach as the disease has progressed.
“It teaches us that bad days aren't really bad days,” Gretna Head Softball Coach Bill Heard said. “When he's smiling and he's happy and he goes about things the way he does you know the rest of us probably follow suit.”
Drew's parents say he can recognize Bill's voice across the field and it helps put a smile on his face. When the jamboree came together Bill told the Hastings team Drew's story. For the coach, it hit home.
“My son had leukemia when he was three years old so when you hear stories of a young child going through something like this it makes you really want to reach out and help people,” Hastings Head Softball Coach Pete Theoharis said.
The Sillmans say it feels amazing to have this support across Nebraska. Only four people in the state have the disease. Bill said with the difficult prognosis the Sillman's are guiding others on how to take in Drew's story.
“Just live one day at a time really, don't think too far into the future other than just our hope for more research and getting treatments and clinical trials available for kids with this disease,” Cara Sillman said.
So the young boy who loves baseball has a lot of support and a lot of reasons to smile.
Follow Drew’s journey on Facebook at Batten 4 Drew.