Air Purifier helps struggling boy

LITTLE YORK, Ill. — Tyler Montooth loves to look at pictures and cards. He loves to interact with people and play with his two older brothers. He loves to laugh, infecting everyone around him with delight.
But Tyler doesn't know what grass feels like. He's never been in a pool. He can't even walk yet.
Instead he's had to deal with severe combined immunodeficiency syndrome, a disease often referred to as the bubble boy syndrome that leaves him highly susceptible to infection.
At 20 months old, Tyler has been in the hospital 13 months of his life. At just 13 pounds, he can't walk and only recently learned to crawl.
Unfortunately, his family is running out of money to treat him.
"We are literally dying," Bob Montooth said. "We are living on credit card after credit card."
Tyler, who is in the hospital again with a severe infection, may have to be taken to Washington, D.C., for additional treatment, but the family can't even afford to drive there.
"It's just stressful not knowing what the outcome will be," Montooth said. "We get something cured, then something else happens. It is hard to see your son go through that. And not knowing whether or not he's going to make it is hard.
"It's hard on our other two kids as well," he added. "It's summer and they can't go outside because we're afraid they'll bring something in (that will infect Tyler)."
So far, the family has spent or accumulated bills totaling more than $1 million to fight the disease.
Tyler's older brother, Dylan, also was born with the disease, but after a bone marrow transplant, he was cured. At 8 years old, he has a fully functioning immune system.
On the other hand, Tyler's little body is its own worst enemy. In December 2003, Tyler had a stem cell transplant of healthy T–cells, those that fight infections. His old T–cells and the new ones still are battling to take over the body.
Because of the slow pace of the T–cell takeover (it normally only takes one year; for Tyler, it may take five), Tyler has been diagnosed with chronic graft versus host disease, which requires immune system suppressants, the very thing he is trying to build. The immuno–suppressants also affect his growth.
He's still fighting, but his fight is getting harder.
The insurance coverage has reached its maximum limit, and Tyler has been put on Illinois Medicaid, which doesn't cover everything he needs.
The family often pays $300 for one bottle of drugs to treat Tyler's system. They also have to pay for the materials needed to create a germ–free home.
They spend more than $50 a week on disinfectant wipes and hand sanitizer and more than $60 a week on moisturizers and creams for Tyler's skin. Tyler goes through 15 to 20 diapers a day because he needs to be changed as soon as he dirties a diaper.
The Montooths must run air purifiers at all times and give Tyler purified water since tap water has bacteria in it. They have to buy face masks that Tyler can wear whenever he leaves the house. They need a special formula so Tyler can gain weight.
Then there's the cost of gas to drive to Iowa City every week for check–ups. When Tyler is admitted to the hospital, on average for a month at a time, he is kept in the bone marrow ward that costs $1,500 a night.
It's a cost the Montooths didn't expect when they started having children.
"We thought it was a fluke that Dylan had it," Montooth said. "No one could tell us why he had it — if it was because of blood mixtures or a defective gene."
Then 6–year–old Brandon was born with a healthy immune system. It was only after Tyler was born that the couple learned they both had a defective gene, which once mixed together, caused the disease.
Tyler keeps pulling through, though, and the Montooths hope to keep giving him the chance to do that.
"Every little thing helps," Montooth said.