Concert to benefit a local eight year-old with a terminal illness
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Updated: 12:21 AM Feb 4, 2010
Concert to benefit a local eight year-old with a terminal illness
Every parent looks forward to a lifetime of memories with their children. Sadly, a Michiana couple knows their years are numbered.
Posted: 10:57 PM Feb 3, 2010
Reporter: Erin Logan
Email Address: erin.logan@wndu.com
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Every parent looks forward to a lifetime of memories with their children. Sadly, a Michiana couple knows their years are numbered.

Royer and Heather Allman’s eight-year-old son has a terminal illness called Batten Disease. It's a neuro-degenerative disease that only 450 children in the United States and Canada suffer from.

The Allman family was nominated and chosen for the 2nd annual Concert for a Cause through the Mishawaka Police Department. It's part of the Tom and Bryan Foundation honoring two Mishawaka policemen who were killed in the line of duty in 2003.

Tyler’s parents say their only hope is to raise awareness about this terminal illness and hopefully find a cure for Batten Disease.

Judging from his first year in t-ball, Tyler’s parents thought, "Wow, we may have a star baseball player someday."

During year two, something was wrong. His glasses weren't helping at all and he couldn't run.

Heather says, “He was starting to lose his fine and gross motor skills and have vision problems, so we ended up going down to Riley and back and forth a few times and just through an eye exam, through an opthamologist, he was able to tell by taking a tissue in his eye he had Batten Disease.”

Batten Disease is rarely diagnosed immediately. Children lose skills they already developed and both parents must carry the defective gene.

Heather says, “He has the juvenile form which puts his life span at late teens, early 20's.”

It's often mistaken for Epilepsy, Mental Retardation, Bipolar Disorder, and Retinis Pigmentosa.

Heather says, “Eventually he will be bedridden, tube fed, blindness, kind of what some people would consider bipolar, because there are so many changes with mood swings. We have to think about the future, have to think about the home we live in. We live in a tri-level home now, so pretty soon it's not going to be conducive.”

Tyler's younger brother, Ryan, is having a difficult time watching his brother's health get worse.

Heather says, “It's not your typical brother playing because they're not on the same level. God gave him to us and we do the best we can as parents and we can handle what he has given us.”

Tyler is actually part of a clinical trial in Rochester, New York. His dad is very hopeful for some good results as this is the nation's largest research facility for Batten Disease.

The “Concert for a Cause” is this Saturday, February 6th at the Mishawaka F.O.P. It’s from 7-midnight. Cost is $10. Two popular bands, Stillshot and Blammo will be playing. There will be food and drink available for purchase, as well as a silent auction and prizes.

All proceeds from the concert will benefit the Allman family.

If you can’t make it, you can send a check or money order to Tom and Bryan Foundation, Inc. P.O. Box 878, Mishawaka, IN 46546.


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