By ERIC A. HOWALD
Of the Keizertimes
Two years ago, Allison Reetz underwent three operations that had family and friends fearing for her life.
Allison, who was 13 years old at the time, chose not to know about the worst possible outcomes, which included not surviving the procedures.
“I just wanted to live my life. If I’d known, I would have freaked out,” Allison said.
Fortunately, the now-15-year-old made it through the operations and was recently named the southwest Washington and Oregon state ambassador for the Muscular Dystrophy Association (MDA). She served as the Marion County ambassador in 2016.
“I went to the Fill the Boot Boot Camp and the Salem, Marion County and Keizer Fill the Boot events last year. I went to the Muscle Walk and tried to make it to every event in the area. It’s pretty much the same thing with state, but on a higher level,” Allison said.
The highlight event this time around will be delivering a speech kicking of the 2017 Muscle Walk.
Allison was diagnosed with mitochondrial myopathy complex I deficiency at the age of two, but her mother, Elizabeth, said signs of a problem were evident from birth.
“I had problems throughout my pregnancy and Allison was born six weeks premature – she weighed three pounds 14 ounces. She had to have a high-calorie formula to gain weight and she started missing development markers,” Elizabeth said.
Even after finding a doctor willing to take the developing issues more seriously, it took another nine months to settle on a diagnosis.
Mitochondrial myopathy is a rare genetic disease, but one covered in the research performed by the MDA. Mitochondria are specialized compartments in cells that create 90 percent of the energy needed by the body. When they don’t perform their job correctly, it can lead to a host of symptoms ranging from blindness to coma to developmental regression.
In Allison’s case, one of the primary symptoms is general weakness. After years of specialized care – Elizabeth estimates Allison has been the subject of more than 300 tests in her short life and she’s been taken to the emergency room at least two dozen times – the pain walking caused her became too much to bear.
“I had a back brace, but I would get too hot because I can’t regulate my body temperature. I just wanted to try something else than keep trying to correct it on its own,” Allison said.
A lengthy MRI revealed that Allison’s spine had become tethered by other tissue, and it was causing more than just pain. The arc of her back was preventing her lungs from growing and they already operate at a reduced capacity.
She underwent one surgery to release the connective tissue, then another to install a “halo” brace to help straighten her spine was followed by a lengthy stay at Doernbecher Children’s Hospital in Portland.
The last surgery was the most worrisome, to the point that Elizabeth, Allison and her brother David all took a Make-a-Wish trip to Disney World. Allison’s ability to maintain basic life supporting functions like breathing while undergoing the operation to install rods and pins supporting her spine was a concern, but she made it.
“There must have been lots of prayers because she sailed through,” Elizabeth said.
In the two years since, Allison has grown four inches and walking doesn’t hurt as much. She’s even started taking some classes at McNary High School after being homeschooled for much of her life. She started with a creative writing class last fall and will take physical science and a wellness class next term.
The operations revealed other issues that still make daily tasks more of a chore than a fully able teenager would encounter – the latest need in her life is actually a new wheelchair-accessible van – but Allison is as vibrant a teenager as one could hope for.
Her next big service project is making cookies for local first responders as an American Heritage Girl, a Christian-based scouting organization.
She is a voracious reader with an interest in photography and the great outdoors, but she had made attempts to fundraise for “mito” research even before facing down some of her own challenges.
Now that she holds the title of MDA ambassador, it feels a bit like the fulfillment of a dream.
“I like it because I get to meet a lot of new people and I get to be part of raising money for research, even some for kids that are dealing with mito,” she said.
While she has a big year ahead, Allison shows no signs of slowing down.
“Whenever we go shopping, we look for stuff on clearance and we buy art supplies, cake supplies and party supplies so that kids going through halo surgeries at Doernbecher get to have parties,” Allison said.