By Darla Hernandez on WSBT 22

Published May 8, 2014

New challenge for teen stricken by deadly disease

There’s a new challenge for a local family we have been following since 2009.That’s when 13-year-old Tyler Allman was diagnosed with a very rare terminal disease called Batten’s Disease. The toxins eat away good brain cells, causing children to lose their vision and ability to walk and speak.For the Allman family, those days are tough.
“Tyler was fine until he was in 1st grade,” said Tyler’s mother, Heather. “He played t-ball, and then he started to lose his sight and have seizures.”Tyler is now blind and wheelchair bound. Weighing 140 pounds, lifting him in and out of their minivan has taken such a huge physical toll on his mother, she now has extensive nerve damage in her arms and needs surgery.

There have even been times when Heather and Tyler fell trying to get him into the vehicle.

“I sat there on the pavement and shed a few tears until I could physically get him back up,” Heather said.

The Allman family recently started an online campaign-to raise money for a wheelchair lift for their van.

Tyler’s father, Royer, said, “I worry about my wife and my son’s safety and her transporting him and safely, doing that when I’m not around.”

The Allmans say a lot of their medical expenses are not covered by insurance, including the van lift.

“To have a simple wheelchair lift put into our van, it was $28,000. We have so many other expenses and medical equipment we need to get,” added Heather.

Time is crucial for Tyler. The disease is rapidly taking away all of his mobility.

“Tyler’s disease has a life expectancy of late teens, early 20’s, and he’s 13 now, so we don’t know how much time we have,” Royer noted.

Anyone can make a donation at any Notre Dame Federal Credit Union Branch under the name “Team Tyler.”

To donate and learn more about Tyler’s daily fight: https://www.facebook.com/beyondbatten.org

For more information on Batten Disease and to see a special Allman family video:  https://beyondbatten.org/family-stories/the-allman-family-story/

To read the article on WSBT 22, click here.