Teen raises $5,000 to help fight brother's rare disease

Melissa Thompson always wanted her children to know they could change the world.

Up until recently, it was an abstract idea. But then the family started raising money to benefit research for the disease 4-year-old Jack suffers from, and his brother Sam Grant wanted to help.

So he started e-mailing, calling, and checking back in to see if friends, family, teachers and others could help with the cause.

So far, the Batavia High School freshman has personally raised more than $5,000 toward research into Langerhans cell histiocytosis. Although researchers think a cure for the disease might be found within the next 10 years, it receives no government funding because it is so rare.

"The thing that makes me feel the most proud is that he feels he could do something to make a difference, to change the world," Melissa said.

Sam will make good on his pledges on Sunday as one of the runners at the first Histio Heroes 5K race in Batavia.

Living with LCH

Jack Thompson was a late walker. A physical therapy worker noticed he flinched when pressure was put on one side and suggested that parents Melissa and Jeff have him taken in for tests.

He had just turned 2 when his family found out he had a tumor that was two weeks away from shattering his femur and diagnosed him with Langerhans cell histiocytosis.

The disease affects only one in every 200,000 children. It's caused by an overabundance of white blood cells, which attack different parts of the body in different children.

For Jack, it's been in his bones.

Besides the tumor in his leg, he has had several in his skull removed.

He's had a biopsy and two surgeries and is on his second round of chemotherapy. Although the disease is not a cancer, it's treated in much the same way.

The disease rarely affects adults, and in many cases it goes away as the child grows up. The cause is unknown and can be fatal in severe cases.

Jack's case is not one of those, Melissa said. The family is hoping that when this round of chemo is finished in October the disease will become dormant.

But since Jack's birth, it's been a part of their life. Because it is an immune system disease, cleanliness is a constant concern.

Sam and his brother, Ryan, remember having to change clothes in the laundry room after coming home from school so germs wouldn't come into the house. During his first round of chemo, Jack was at home all the time, meaning the entire family couldn't ever go out together.

"Sometimes Jack is tired and cranky," Sam wrote for a school project explaining the disease. "Sometimes he is happy and perky. It just depends what his white blood cell counts are."

The family showed the booklet with photos, descriptions of the disease and X-rays to officials at the Histiocytosis Association of America, who are considering printing and distributing it to families new to the disease.

Through this round of chemo, Jack is doing better. He attends preschool three days a week. But if any child is sick or goes home sick, he takes a few days off just in case.

He's a rambunctious boy with huge blue eyes and has constant stuffed duck companions he got when he was in the hospital. He doesn't like the chemo, and occasionally asks to not have to take the steroid pills that go along with it, which he calls his "crabby medicine."

Running for a cure

More than a year ago, the Thompsons met the Kurtz family of Wheaton at a conference on the disease and had the idea to host a fundraiser for the cause.

"After we met some more people, it seemed a little less daunting to take it on," said Pam Kurtz, whose 3-year-old daughter, Melanie, has the disease.

It has affected Melanie's blood, causing cells to attack each other. She had a bone marrow transfusion at 3 months old that failed and another when she was 13 months old.

That one was successful, and she has been symptom-free since.

"She's doing so well now," Pam said. "She was so young then, I think she just thought it was normal."

Parents in both families were runners, so they decided to go that route for a fundraiser.

"This is the only way research is funded right now -- through fundraising and individual donations," Melissa said.

More than 120 people have signed up so far, and with race-day signups, the organizers expect more than 200 runners on the Fox River Trail in Batavia on Sunday.

Some of the racers -- including some family members of the 17 children affected by the disease who will be at the race -- raised pledges as well.

But no one raised as much as Sam.

When he decided to start fundraising, he set a $1,000 goal. That was quickly eclipsed, as were other goals. As of late Thursday afternoon his fundraising total was $5,330.

Sam doesn't necessarily consider the amount he's raised so far a success.

"It makes me feel really special to hand over that much money," he said. "But my goal is to find a cure."

After the race is done he plans to start raising money for next year's race.

In his health class, his fundraising efforts have been used as an example of how to set and modify goals. Sam said he's gotten a good reception -- and some donations -- from his classmates.

What's exciting for him is to think he could easily see the disease cured in his -- and Jack's -- lifetime.

"That would be really cool, if I could help out in some way, that I could say I helped find a cure," Sam said.

How to help

The Histio Heroes 5K race begins at 8 a.m. Sunday along the Fox River Trail in Batavia.

Early registration: 4 to 8 p.m. today and 10 a.m. to 2 p.m. Saturday at Dick Pond Athletics, 303 N. Second St., St. Charles. Cost is $25.

Race-day signup:

6:30 to 7:45 a.m. at the Peg Bond Center, 151 Island Ave., Batavia. Cost is $30.

Donate to Sam's campaign: www.active.com/donate/histioheroes/sdgrant

For more information:

www.histioheroes.com