Anyone still in the process of making New Year’s resolutions need look no further if the goal is to do more good deeds in 2017.
A local family desperately needs some neighborly help, and it can be done with a donation of any size.
Frankfort Square residents Bill and Allison Brya and their two children have been on a heartbreaking eight-year journey of life-and-death health issues, with no end in sight.
In 2008, their oldest child Bella, now 11 years old, suffered a brain hemorrhage which doctors said put her in “a life and death situation,” Allison Brya said, and then left her profoundly physically impaired.
“They told us she bled in all the ventricles of her brain,” Brya said. “It’s a miracle she’s even here.”
The 2–year-old child had been “a typical growing girl” to that point, according to her parents — running, playing and beginning to have the delightful conversations only a toddler can create.
All that tragically ended in a moment, and no one knew why, Brya said.
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“It was just all a trying time,” she said.
Bella lay in a coma in the hospital for weeks before she could have surgery to repair the arteriovenous malformation or AVM, a tangle of abnormal blood vessels connecting arteries and veins in the brain. Bella’s survived the surgery, which took place the day before her third birthday, but the damage had been done. When she returned home, Bella was unable to walk or speak and needed constant care.
At the very same time, Allison and Bill were awaiting the birth of their second child, who arrived within eight hours of Bella’s return home.
But the joy of their son Liam’s birth was marred by unexpected bad news. Liam was born with an underdeveloped right ear and facial abnormalities — the result of Goldenhar Syndrome — and they would not know the extent of any hearing impairment or other possible problems without testing, Brya said.
An MRI revealed the unthinkable. Liam had a tumor on his brain stem which would require surgery if it grew, and any effects of the tumor or the surgery were uncertain, Brya said.
By the time Liam was two years old, the tumor doubled in size and surgery was required. Liam lost the use of his arm and leg on his right side.
During this time, Bella developed hydrocephalus and had surgery to place a shunt in her head. Brya said most of the gains Bella made in physical therapy were lost following the surgery, a pattern that has continued with each subsequent operation. Bella also began having multiple daily seizures and developed dystonia, an involuntary movement disorder. She could no longer eat by mouth.
Brya said both children needed three hours of physical therapy daily.
“For the next year and a half, we carried both kids around…,” she said.
Brya said despite Bella’s constant physical setbacks, she continues to improve cognitively in “subtle ways.”
The family has noticed that Bella focuses better, responds to them when they speak to her, makes more frequent eye contact and has been able to use electronic devices for simple communications.
And, they finally have an answer to why much of this is happening to them. Because of Bill Brya’s family history and some symptoms such as daily nosebleeds that he and Liam both experienced, Bill and the children underwent genetic testing. Tests revealed that they all have hereditary hemorrhagic telangiectasia or HHT disease, a genetic disorder that causes abnormal blood vessel formation.
Tests also revealed that Bill had an AVM, “a ticking time bomb” in his brain which could potentially cause the same catastrophic hemorrhagic stroke that Bella endured eight years before.
Bill Brya was operated on successfully in late September and is still recovering from brain surgery. He has a second smaller AVM which the doctors are watching, Brya said.
His illness complicates the family situation further.
For most of Bella’s life, Bill has been her primary caretaker. But Bill can no longer lift Bella because of a hernia caused by lifting Bella and her special need equipment into the family vehicle for so many years and because he must recover completely from his brain surgery before resuming normal caregiver activities. Brya said she, too, is no longer able to lift Bella and her wheelchair into a vehicle because not only has Bella grown, but the larger wheelchair is very heavy.
“The days are gone where I can take Bella anywhere by myself,” Brya said.
The Brya family is in dire need of a handicapped-accessible van to get Bella safely in and out of the vehicle and to transport her wherever the family goes.
For the Brya family, not having a vehicle that accommodates every family member means that the family outings which gave them a feeling of normalcy are “out of the question.”
And, from Bella’s point of view, Brya said, it’s a loss of the joy Bella had of going outside and enjoying the park and the zoo and other family outings. Bella’s world is even more limited.
“It’s for Bella more so than for us,” Brya said. “I’ll do anything I have to get her out, but it’s not safe anymore.”
More information on the family’s fundraising efforts is at www.forbella.org.
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Ginger Brashinger is a freelance columnist.