Story URL: http://news.medill.northwestern.edu/chicago/news.aspx?id=199382
Story Retrieval Date: 5/21/2013 7:49:36 PM CST
The Bryas celebrated Bella's 5th birthday at Walt Disney World thanks to the Make-a-Wish Foundation.
Cool dip to warm the hearts of two deserving families
When Bill Brya plunges into Lake Michigan Saturday, it won’t be just for sport. He’s one of several hundred expected participants raising money for three Chicago children – including his own son and daughter.
Bella Brya, 6, appeared to be perfectly healthy until her stroke when she was 2 ½ years old. This left her with severe disabilities and in a wheelchair. She requires constant medical care.
“We’re grieving still because we had a girl that used to be able to laugh and play,” said her mom, Allison Brya, 41. “In one minute, our lives changed.”
Although Bill and Allison Brya didn’t know it, Bella was born with cerebral arteriovenous malformation, a condition with abnormal connections between arteries and veins in the brain affecting less than 1 percent of the population, according to the National Library of Medicine. The misaligned arteries and veins ruptured and caused a hemorrhagic stroke.
“Doctors said she probably wouldn’t live through the night, and here it is four years later,” Allison Brya said. “We kind of don’t listen to prognosis.”
With no income and health insurance that will expire in two months, the family faces financial hardships. But the Bryas will benefit from Saturday’s polar plunge, when several hundred people will jump into Lake Michigan to raise funds for them and others.
“When Brian had contacted us about the Polar Bear Club, we were in tears because at that time I had just lost my job at Borders,” she said. Brian Marchal, the founder, contacted the family last September.
The 11th Annual Lakeview Polar Bear Club’s Polar Plunge is set for Saturday at noon at the Oak Street Beach. The nonprofit is splitting all proceeds between the Bryas and another family with a sick child.
As of Thursday, 340 people were registered to participate, and the club had collected nearly $9,000. Marchal said he expects a lot more money to come in from on-site registration, merchandise sales and an after-plunge party at Sedgwick’s Bar and Grill.
“We are overwhelmed,” Brya said. “We know how important everyone’s time is. To jump into the lake in the middle of winter, we really are thankful.”
Bill Brya lost his job as a graphic designer three years ago and has been Bella’s personal caretaker since then. Allison Brya worked part time at Borders until four months ago.
“It’s too hard to hold a job when both kids are in and out of the hospital,” Allison Brya said. There’s always therapy and doctor’s appointments, she added.
Since the rupture, Bella has had multiple surgeries, including brain surgery. Last week she went in for surgery to lengthen her tendons so she would have more mobility in her hips and legs, Brya said. Bella will be in a full-body cast for the next two weeks.
Bella may not be like other kindergarten kids, but her 3-year-old brother, Liam, never knew her before her stroke and wheelchair.
“He knows that she doesn’t walk and doesn’t talk, but to him, Bella’s like any other sibling because that’s how he knows her,” said Brya.
Liam also has multiple health problems. He was born with microtia; a severely underdeveloped ear. Doctors also diagnosed him with Goldenhar disease, a condition that often occurs with microtia. The disease has left him with facial structure problems on the right side, spinal deformities and failing eyesight, Brya said.
Doctors also discovered a congenital tumor in Liam’s brain stem when he was 1. Six months later, surgeons removed most of the tumor but had to leave some behind because it was too close to the brain stem. He now goes to Advocate Hope Children’s Hospital in Oak Lawn every four months to make sure the tumor doesn’t grow, Brya said. The last time he went in, his tumor had not grown.
“We just live one day at a time with both kids,” she said. “We just pray one day [Bella] will be able to walk and talk.”
For now, Bella goes to about six sessions of therapy a week: physical, occupational and speech, costing about $640 a week.
Shari Cassidy, Bella’s physical therapist of three weeks, said she thinks Bella is going to need a lot of assistance for the rest of her life. “She has a young brain and young brains do recover better,” but she did not want “to negate the significance of her injury and that it happened three years ago. For her to recover from an injury like that would be a miracle.”
Bill Brya is raising money in support of Katie Kline, the other family’s daughter, who has cancer. As of Friday, he has raised $200 for Katie.