Smiles for Miles: Bellwood couple forms organization to help grandchild
Penny and Jerry Brunner of Bellwood found out they were going to be grandparents when they received Penn State shirts from their son, Matthew, a graduate of Penn State University, emblazoned with the words “Grandma” and “Grandpa.”
“It was at a Penn State game,” Penny said. “We were all so excited,” recalling the day she and her husband learned they would soon welcome their first grandchild.
But their joy turned into something different just days after their grandson, Miles, was born.
Miles was born Oct. 31, 2012, with a rare genetic disorder called nonketotic hyperglycinemia, abbreviated as NKH. The disorder affects 1 in 60,000 births, said Dr. Johan Van Hove, a geneticist who specializes in the disorder and a professor of pediatrics at the University of Colorado in Denver.
According to the NKH Network, babies with the disorder cannot break down the amino acid glycine because of a genetic defect. The glycine builds up in their bodies and affects brain function. Symptoms of the disorder include seizures and problems with learning and development, according to the NKH Network website.
Some children with NKH have mild symptoms, but many others have more severe symptoms such as seizures that are very difficult to control. These children usually eventually require artificial ventilation, according to the website. In those cases, the disorder is often fatal, it said.
When they heard the news about Miles, they were stunned, Penny said.
“I can only tell you, in the blink of an eye, we went from the happiest day of our lives to a fog of disbelief,” she said.
But the Brunner family is fighting back against NKH, forming the “Smiles for Miles” nonprofit organization with their son, Matthew, to help raise money for research to find a cure for the disease, Penny said.
And the possibility for a cure is not without hope, Van Hove said.
“Many rare diseases have had great curative treatments whereas many common diseases have had very poor outcome,” he said. “It is not the frequency of the disease that dictates whether a curative treatment is possible. It is rather the understanding of the disease process and the current technical options that make a treatment possible.”
Van Hove said he was skeptical he would see “possible treatment in my lifetime.” But he now has a more positive outlook.
“New avenues such as stem cell technology have really raised my hope that this is within our reach,” he said.
Matthew Brunner, who lives in Harrisburg, said Miles was very quiet when he was born, but being a first-time parent, he didn’t know at first that was abnormal.
But after five days, when Miles was still not eating much and was very sleepy, Matthew and the baby’s mother, Amy Dull, knew something wasn’t right. They took Miles to the emergency room, where doctors agreed the baby was in serious condition and had him flown to Hershey Medical Center, where he was diagnosed with NKH.
“To be honest, it was like my entire life flashed before my eyes,” Matthew said. “I found it ironic that days before, I experienced the best day of my life in welcoming him into the world, and days later, I experienced the worst day of my life in being told this information concerning my only child.”
But Matthew said Miles is doing well, and the family is making the best of a difficult situation.
“His life has taught me so much more than I could ever have imagined, and I am privileged to have him in my life and honored to be his father,” Matthew said.
Penny Brunner said she and her husband try to visit Harrisburg to see Miles at least once a month.
“Nothing is as important as seeing him,” she said.
When she’s not visiting her grandson, she and her husband are packaging wristbands for the “Smiles for Miles” group or making plans for an upcoming fundraiser, planned for next month, to help raise funds for the group. The fundraiser is a golf outing at the Sinking Valley Country Club scheduled for Oct. 6.
Gwin, Dobson & Foreman Engineers, where Jerry works, is sponsoring raffle prizes at the outing.
All of these activities give the family a feeling that they’re not so helpless, Penny said.
“This disease leaves you feeling like you have no control,” she said. I can’t donate blood, I can’t donate an organ. This will be Miles’ legacy. This isn’t just a temporary fundraiser.”