Spring Grove family recovers from effects of child's illness

SPRING GROVE – On New Year's Eve when he was just six months old, Brent Groza nearly died.

He had been born diabetic, which required his parents to check him every 15 minutes and to poke him with a needle to check his blood sugar levels, but when he was about five months old, he started to get really sick, projectile vomiting and suffering from eczema.

The diagnosis was a rare and potentially fatal autoimmune disorder called IPEX syndrome, which means a recessive gene is causing his immune system to attack multiple organs and areas of his bodies.

Without aggressively suppressing the immune system or a bone marrow transplant, most children with this syndrome die within the first year or two of life, according to the National Institutes of Health. A few with a milder version of the syndrome have survived into their 20s or 30s.

Brent will be eight years old on July 25, and his parents, Pete and Melissa Groza, hope that he'll be the first long-term survivor.

"I remember thinking, 'He can't die,'" his mother said, recalling the doctor's grim news that most children with IPEX syndrome didn't make it past two years. "He'd only have 19 months. He wouldn't get to drive a car, have his first kiss or go to school."

Brent underwent bone marrow and stem cell transplants, both of which didn't take, and then eventually had a donor's lymphocyte – or white blood cells – injected into his body.

It appears to be working.

Brent has had "one really good year," Melissa Groza said.

He still needs insulin injections to manage his diabetes and hormone supplements to replace the hormones no longer produced by his destroyed thyroid, and the chemotherapy he underwent to suppress his immune system affected his brain development.

Math is difficult; he reads at a kindergarten- to first-grade level even though age-wise he should be in third grade; and he has only 2 to 4 percent of the working memory that he should.

But all the years of medical treatment and hospital visits have exacted another toll on the Groza family.

The couple lost cars, their house and jobs over the years. The medical bills – the parts not covered by insurance – reached $30,000 forcing them to pick between paying those bills or putting food on the table.

The family had to split up, Melissa and Brent staying with her parents in her native Minnesota and Pete raising their daughter Charlotte, who is almost exactly two years older than Brent.

Four years after filing for bankruptcy, the family is trying again.

"We're clawing and pushing," Pete Groza said. "We're trying to turn it around."

Last week they moved to a new home in Antioch and one of their old neighbors from the four years they spent in Spring Grove has planned a fundraiser to help with the medical bills that continue to pile up.

Melissa Groza hopes to raise $5,000, the cost of the annual barrage of tests Brent has to go through.

"All of this still seems like a dream, surreal," she said looking around their new home as Brent and Charlotte played on tablets on the couch and the newest addition to the family, 11-month-old Alexander, pushed a footrest across the room.

They've lived in three charity-funded homes for families of children in hospitals, two apartments and with Melissa Groza's parents.

The last apartment was tiny with a sinking floor and mold, a real concern for parents with a child on immune system suppressants. But the thought that it can all fall apart again still really worries them, especially when they try to plan for the long-term nature of Brent's medical condition.

To help

A fundraiser to help the Groza family cover the medical costs associated with seven-year-old Brent Groza's rare autoimmune disorder is planned for July 20.

It will take place noon to 5 p.m. at The Shores of Turtle Creek, 7908 Winn Road in Spring Grove, and will include live music, food, a silent auction and a 50/50 raffle.

The cost is $20 for adults, $7 for children six to 12 years old, and free for children five and under.

For more information, contact Wendy Rinda at 847-812-3136.