Indy never gives up
Indy Stuker, a Rathdrum 2-year-old, has a a rare degenerative disease of the nervous system that gives he her issues with vision, speech, balance and hand-eye coordination. Her mother, Sarah, is the National Ataxia Foundation's ambassador for Idaho. A support meeting for those with rare diseases will be held from 1 to 3 p.m. on Sept. 28 at the Post Falls Library. (Courtesy photo)
Eilie Stuker, right, Indy's older sister, has been supportive during Indy's fight with her rare degenerative disease. (Courtesy photo)
By BRIAN WALKER
Staff Writer
RATHDRUM — When Indy Stuker started to lag typical child-development milestones, her mother, Sarah, began asking doctors questions.
"Everyone kept telling me that she would catch up, but she didn't," the Rathdrum mother said. "She fell further behind."
When Indy was 2, she was referred to a neurologist, who diagnosed ataxia, a degenerative disease of the nervous system.
After several months of tests, physicians have narrowed that down. Indy’s precise condition is spinocerebellar ataxia type 19, a very rare type of ataxia characterized by cognitive impairment.
"My husband (Blake) and I were in shock, and we had to deal with the fact that the future we planned for our daughter might not be the way we thought," Sarah said.
They were living in Alaska at the time. They closed their business and moved back to Rathdrum, where Blake grew up, so they could be closer to medical care.
Indy has vision, speech, balance and hand-eye coordination issues. The disease causes the cerebellum — the area at the back and bottom of the brain — to shrink over time. Indy wears a helmet to protect her brain from any further damage. Ataxia causes problems with balance, putting her at risk of falling.
"She has her normal routine like every other kid, but we also have to do physical therapy, occupational therapy and speech therapy," Sarah said. "She also has to be watched very closely because she falls often. She has some difficulty eating, so we have to give her softer foods than most kids her age."
Indy never gives up, Sarah said.
"She goes and goes and goes," Sarah said. "We don't tell her she can't do something. Sometimes we have to let her struggle a bit, but when she figures something out, she is so proud of herself."
Sarah said Indy's life expectancy is unknown.
"The good news about her [condition] is also the bad news," she said. "We have no one else to compare her to. Some types are extremely aggressive and unfortunately we know of several children who have lost their battle as young as 2.
"We don't know what to expect and, to us, that's a good thing. Her doctors are hopeful for her, and we are, too."
Sarah said Indy smiles and laughs a lot and is a joy to be around.
"She gets away with a lot because she is so cute," Sarah said. "She is obsessed with her older sister, Eilie, and wants to follow her around all the time."
Sarah said there are clinical trials for medicines to treat spinocerebellar ataxia, but not type 19.
"There is no cure and no FDA-approved treatments for any type of [spinocerebellar ataxia]," she said. "Right now, we just focus on progress."
Sarah said only 12 people across the country have subtype 19. Only one other child was diagnosed with early onset type 19 with a new mutation.
Sarah is the National Ataxia Foundation's ambassador for Idaho. She invites those with any type of rare disease and their caregivers to a support meeting on Sept. 28 from 1 to 3 p.m. at the Post Falls Library.
"If we can gain enough traction, we'd like to have a fundraising walk/roll in the future," Sarah said. "I'd like to raise awareness in Idaho about ataxia and what people with ataxia go through. This diagnosis has opened our eyes to so many people going through so many hard things."
Contact Sarah at sarahestuker@gmail.com.