Community rallies around teen, but needs are great

Here's the thing

VIRGINIA BLACK
South Bend Tribune

MISHAWAKA -- Tyler Allman's lanky body is the product of his 13 years, but the rare genetic disease that plagues him does not allow him to use it like a 13-year-old should.

The juvenile form of Batten disease, a neurological condition that is ultimately terminal by the late teens or early 20s, has quickly robbed Tyler of his eyesight, his ability to walk, to speak well or even to pull himself up by his arms.

Moreover, says his mother, Heather, his mind is mostly stuck where it was when he was around the age of 4.

Tyler loves movies and TV shows -- listening to them, now -- but his favorites are those he knew when he was younger. "Frozen"? He's not interested.

"We're stuck with 'Dora,' 'Cars,' the 'Santa Clause' movies with Tim Allen -- the things we were watching when he could still see," says Heather, and Ryan, Tyler's 10-year-old brother, adds, "We've had to buy the first and third 'Santa Clause' movie three times."

But buying extra copies of old movies that are easily worn out is easy compared to adjusting to a disease that seems to be ravaging Tyler's body more quickly than is typical for those his age.

Since Tyler's various symptoms first manifested themselves when he was 2 and were finally diagnosed at 9, the family has tried to keep up with the costs that insurance don't cover.

For the last several months, the Allmans have been trying to raise more than $28,000 to fit their minivan with a wheelchair lift, because as Tyler's weight has topped 145 pounds, his mother has sprained her back and now needs tendon and ligament surgery to her right arm. Donors have contributed more than $18,000 so far.

In addition, as Tyler has continued to lose muscle tone, the family is now looking at ways to find a hospital bed for his bedroom.

Just 18 months ago, Tyler had been walking with assistance, and now he can't sit up on his own.

Heather can describe these things matter-of-factly to the new person sitting at the kitchen table, just as she can discuss the moment she learned the truth about Tyler's fate.

It was Mother's Day 2009, and doctors communicating among each other had unintentionally sent a letter to the Allmans' home, describing their suspicions that the wide range of symptoms Tyler had suffered for years were linked to Batten disease. So of course, Heather and her husband, Royer, looked it up.

"In other words, we just kind of found out on a whim," Heather says. "It was shocking."

'An amazing spirit'

Tyler speaks in a series of grunts and noises his family has learned to recognize. Sometimes his words are clear and emphatic.

"Who's Team Tyler?" his mother asks him, for example.

"Me!" he responds.

"That's right," she says.

Tyler often refers to Peter Pan, a personal hero ever since Make-A-Wish sent the family to Disney World soon after his diagnosis in 2009, while he could still see.

The teen just finished sixth grade at nearby Hums School, where Tyler is a sort of "rock star." The kids there have been supportive both emotionally and financially, where on special days the students and staff wear special Team Tyler shirts -- Superman blue with similar logos with T's where the S would be.

Ryan's shirt includes "Tyler's brother" on the back.

Ryan, who looks much bigger than his 10 years, says, "He's kind of like the school mascot, you could say. Everybody knows him and everybody loves him."

His brother, sitting in the sunroom next to a pillow embroidered with the words "Life is short, LIVE IT," says people think Tyler's funny, especially when he makes the right "whoosh!" noise at the right time, or roars.

"All of the kids his age knew him before he was diagnosed," Heather says, "so they've been on this journey with him. They always include him, and they never leave him out."

It's a little bittersweet that his classmates will go on to middle school next year, while Tyler will remain at Hums.

But students at other schools also have taken on Tyler's cause; the Allmans received more than $1,000 just last week from John Young students who raised money toward the wheelchair lift.

"All these kids really, truly want to help any way they can," Heather says.

Before Tyler's health issues became so all-encompassing, Heather worked full time in a dental office in a job she loved. Now, the family relies solely on Royer's job as a national fleet account manager. And because Royer is out of town for work about 75 percent of the time, lifting Tyler falls mostly on Heather.

Medications mostly keep Tyler's seizures under control -- although they have been more frequent recently, for some reason -- and help with other issues. But the family knows there's no cure for the rare ailment that afflicts only about 500 children in the United States.

Both parents carried a recessive gene for Batten disease, Heather says.

The family is trying to persuade the insurance company for the need for Heather's arm surgery and for nursing help to lift him, she says. Ultimately, they'd like to help organize special walks and fundraisers for more research on the disease few people have heard about.

But as things are, they take one day at a time.

"He never feels sorry for himself," Heather says of Tyler, who is now asleep in the van after Ryan has helped his mother lift him into it. "He has such an amazing spirit."

VBlack@SBTinfo.com

574-235-6321

Heather Allman grasps her 13-year-old son, Tyler, to help him into the family van Friday. Even with Tyler's 10-year-old brother, Ryan, helping, it's a strain on his mother's back and arms. (SBT Photo/VIRGINIA BLACK)
Heather Allman pulls Tyler back in his wheelchair and speaks with him in preparing to go outside. Tyler's rare and ultimately terminal disease means that although in some ways he comprehends things like the 13-year-old he is, in most ways his mind is still that of his 4-year-old self. (SBT Photo/VIRGINIA BLACK)

To learn more about Batten disease or about ways to help or to contribute financially, go to these websites:

  • facebook.com/beyondbatten.org
  • gofundme.com/tylerallman