By Kofo Lasaki | Feb 28, 2016 | NewsCenter 16
Mishawaka- Over the years NewsCenter 16 has shared with you the story of Tyler Allman and how the Mishawaka community has come together to support him and his battle with Batten Disease.
Monday is National Rare Disease Day and the Allman family wants to bring awareness to the thousands of uncommon disease that will affect 1 out of every 10 Americans.
The Allman family says you’re given what you’re given for a reason.
And for whatever reason they were given Tyler, their 14-year-old son who loves life and brings a smile to everybody’s face.
“We have hard days where we look at each other and think why is this happening, not just to us, but even Tyler,” said,Tyler’s Mom, Heather Allman.
Tyler was diagnosed with a rare genetic nervous systemdisorder called Batten Disease.
He’s lost his ability to see and he’s been bound to a wheelchair since he was 11.
“He’ll never have kids; I’ll never have grandchildren from him. None of those things he’ll ever have because today will be better than tomorrow,” said Tyler’s Mom.
Tyler’s brain is slowly shutting down and each day is a little worse than day before.
The Allman’s know time isn’t on their side, so they enjoy each and every moment, but it’s hard not to wonder what could’ve been.
“From one year to the next to see him kind of regress, and not be the natural athlete I know he could be without the disease, yeah it’s tough,” said Tyler’s Dad, Royer Allman.
But tough times are made a little easier knowing they have the support of the community.
That said, for Rare Disease Day you could wear your team Tyler shirts or the colors if you don’t have one.
A small gesture by Tyler’s school makes all the difference in the world.
“It’s those moment where you go in the corner and cry because you’re just so blessed that people do this for you without asking you or making you have to do something for it,” said, Heather Allman.
Which is why they hope to pay it all forward one day.
“We will always try and do him good and always fight for a cure and always fight for other kids and adults that suffer from rare diseases. That will be our attention some day and it will all be because of this child who has no clue what his future holds, but has touched us so deeply,” said Tyler’s Mom, Heather Allman.
On Monday, Tyler’s classmates, along with the entire school at Hums Elementary will be wearing their team Tyler shirts.