School community supports boy, 3, with rare disease
When doctors at UPMC Children's Hospital of Pittsburgh read to Lindsey Walker symptoms associated with Opsoclonus-Myoclonus-Ataxia Syndrome, it was as if they had been watching her then 1-year-old son, Kamden Walker, for the last several months of his life.
The symptoms included loss of dexterity and balance, fits of rage and excessive crying, and rapid multi-directional eye movements, which she said all applied to Kamden.
The only part Walker wasn’t familiar with was the name of the disorder. Opsoclonus-Myoclonus-Ataxia Syndrome is classified as a rare nervous system condition that affects an estimated one in five million children worldwide.
While the family had no history of any type of nervous system disease, Walker said OMAS seemed to be the only classification that fit. Even the fact that symptoms don’t normally show up for the first few months of an infant’s life reflected 18-month-old Kamden’s story.
“Everything lined up,” Walker said. “Opsoclonus is the eyes. Myoclonus is the involuntary muscle spasms and the tremors. The Ataxia is your loss of balance. They sometimes misdiagnose it as Parkinson’s. But they pinpointed Kamden with all those things.”
Kamden was diagnosed with OMAS in 2020 at the beginning of the COVID-19 pandemic — possibly the worst time for a toddler to be newly diagnosed with an auto-immune disorder, Walker said. Every day since then, the family, including his older brother, has been living like it is still mid-2020 using coronavirus precautions.
Kamden is now 3 years old, and treatment at Children’s Hospital has helped suppress some of his more severe symptoms, like rage attacks and complete loss of balance.
“Our main problem is we just need to keep him safe, keep him away from germs,” Walker said. “He’s not allowed any more immunizations. We try to shield him, which is actually terrible to be honest because he doesn't know any better. We're doing something completely different from what our lifestyle used to be.”
According to Walker, doctors have not been able to identify the cause of Kamden’s syndrome. She said every six months Kamden gets an MRI to check for tumors, because a tumor could have triggered his immune system disorder.
“They don't know what the ‘something’ is, but something triggered his antibodies and from then on they started attacking him,” Walker said. “This poor kid had a spinal tap, blood work, a urine test. He gets targeted chemotherapy, he has another round in April to kill his B cells because they are fighting his brain.”
Having a child with such a rare disease wasn’t just frightening to Walker, she said it was emotionally isolating. Online searches for information often came up short, and friends or relatives were unable to offer advice, she said.
Additionally, Walker looks back on the early days of her son’s medical issues and the anguish the whole family experienced, and hopes no one else has to go through such confusion.
“The probability of having it is so small, and I always look back and I’m like, ‘I wish I would have known,’” Walker said. “He went from being a typical almost 2-year-old, he went back to 8 months. Maybe I wouldn't have waited so long.”
The school community has been with Walker throughout much of the process. As a family and prenatal development teacher at Butler Area Intermediate High School, Walker has talked to her students about what she went through as a parent, which is relevant to her lessons.
“It's great talking to them about rare diseases because everybody has had some kind of family issues with somebody,” Walker said. “I absolutely love teaching them that diversity is important because this is a hard age group to be in.”
In response to Walker’s story, students in the Alphabet Soup Group Club started an awareness and fundraising campaign, Kamden’s Krusaders, and sold wristbands to raise money for the OMSLife Foundation.
“I wanted to raise money for this foundation because helping a child with such a rare condition is very important to me,” said Min Brown, a ninth-grade student at the intermediate high school.
Walker said the students may not all understand the research of the disease, but they want to support the cause.
“More research is needed to make sure that these patients can be helped to the fullest,” added Cas Kramer, a ninth-grade student at the school. “I feel that any money we can get for this could help save lives.”
Pam Neely-Aldridge, a sponsor of the Alphabet Soup Group Club, said she has seen students excited to help the Walker family.
“We are grateful for the opportunity to be able to be a part of raising awareness for OMS,” Neely-Aldridge said.
Walker said Butler Youth Baseball also supported the cause and raised $600 for the OMSLife Foundation in Kamden’s name.
Although raising Kamden has been difficult, and his future is uncertain, Walker said she would not have it any other way.
“We give him what he needs. We take him to his treatments, anything he needs he is going to have,” she said. “So we are thankful it happened to us so we can take care of him.”
