Readers' compassion, donations overwhelming to aid Mishawaka family

But support tempered by reality of what's ahead

VIRGINIA BLACK
South Bend Tribune

Last week's column about the Mishawaka family struggling with their older son's rare neurological disorder -- the juvenile form of Batten disease, which is ultimately fatal -- drew an "overwhelming" outpouring of support.

As Heather and Royer Allman took a walk around their neighborhood with 13-year-old Tyler in his wheelchair last week, "a neighbor just shouted out to us, 'Hey, that article was great!' " Heather said Friday.

Readers called The Tribune and the Allmans, offering to donate a van lift or a hospital bed, which Heather needs to avoid further injuring her arms as Tyler's illness progresses as he yet continues to grow.

Or they donated cash to the family's Team Tyler gofundme.com website toward the $28,000 the family had been trying to raise for a new van lift.

Or they sent encouraging messages via Facebook or email.

One Michigan reader, who did not want his name published, was so touched by the Allmans' plight that he provided $10,000 toward their goal.

"I practically broke into tears," he said. "I've had some tragedies in my life, but not that tragic."

Sherry Hocking Tehrani said that after she read the story last week, she told her husband, Haji, with whom she owns Drive & Shine car washes, "I'd really like to help,' and he said, "OK, let's take a day of sales.' "

So on Saturday, half the sales at the Mishawaka location will go toward the Allmans' expenses. Sherry recruited other businesses to help, too.

A new hospital bed is being delivered next week.

Heather Allman says the family has been featured in television spots over the last several years, since before Tyler's 2009 diagnosis, but she wasn't prepared for this reaction.

Yet it was a difficult week, too.

Batten disease is so rare only about 500 in the country have it, so a close-knit online community is a vital support group. This week, four young Batten victims died.

Most Batten victims don't live past their late teens or early 20s, and it's not uncommon for a cluster of deaths in the winter when pneumonia can set in. But it's unusual this time of year.

"It's huge. It's devastating," Heather says quietly. "You look at Tyler and think, 'This is going to happen one day.' The reality of it sets in a lot more."

So in a week of both highs and lows, the Allmans, who perhaps feel those highs and lows more acutely than some of us do, are reminded of the necessity of living well while they can.

"We have such great support," she says, "and that's truly what keeps us going."

VBlack@SBTinfo.com

574-235-6321

Heather Allman takes her son, Tyler, down a ramp in the garage to the specially equipped van for a trip from their Mishawaka home. (SBT Photo/VIRGINIA BLACK)

Drive & Shine will donate half its car wash sales Saturday at its Mishawaka location, 5406 N. Main St., to Tyler Allman's family.

Chick-fil-A will set up a tent from 9 to 11 a.m., and employees will hand out iced coffee. They'll provide coupons to car wash customers all day.

Krispy Kreme will offer coupons to customers and doughnuts to staff and volunteers (who will wear Team Tyler hats and T-shirts).