Kingston is a quiet little boy. The Butte youngster hides behind his mother’s legs when someone he hasn’t met speaks to him, and he quickly runs away from conversation as soon as he can.
Such a quiet 4-year-old, but only until the conversation turns to Legos. Then the story comes tumbling out, fast and furious - how he and his family traveled to Legoland and he built a Lego boat and met Lego ninjas and now he wishes he could live in Legoland.
Kingston’s wish did come true, in a way. His family may not be moving to Legoland, but Kingston, his mom, two brothers and grandmother, recently spent six excitement-filled days in residence at the California theme park, thanks to Make-A-Wish Montana.
Kingston’s mom, 26-year-old Jordan Stevens, turned to Make-A-Wish Montana after her son was diagnosed last fall with a rare genetic muscular disorder that, when it flares up, leaves him unable to move and suffering from intense pain.
When he talks about his trip to California, Kingston’s face lights up and he chatters away like any typical preschooler.
“It was awesome,” he says. “I wish I could live at Legoland.”
Research shows that wishes granted through Make-A-Wish are more than just a one-time event. Wishes impact everyone involved - wish kids, volunteers, donors, medical professionals and communities. For wish kids, just the act of making their wish come true can give them the courage to comply with their medical treatments. Parents might finally feel like they can be optimistic.
“He never stops talking about it,” Jordan said recently. “It was nice to see him play like a normal kid. We’ve been so isolated. He could forget about being sick for a little while.”
On a recent visit to a city park in Missoula, Kingston and his older brother, Jayden, recounted the trip, sometimes in details only a Lego fan could fully appreciate.
The two talked over each other with stories of pirates and ninjas – Nya and Kai to be precise – macaroni and cheese, pickles and cookies (Kingston’s favorite foods), and first-time plane rides. The excited story-telling clearly showed the impact of a wish – a break from medical concerns and uplifted spirits.
The symptoms of the disease first appeared when Kingston was about 18 months old. He lost the use of his legs and pain forced him to stop walking, just at the time little boys begin to explore their world. After four or five painful episodes, numerous doctor visits, a couple of misdiagnoses, and the accompanying fear and frustration, an MRI was scheduled.
The test showed Kingston’s muscles “glowing like a Christmas tree, the muscles were so lit up,” Jordan said. Soon, genetic testing at Shodair Children’s Hospital in Helena revealed the difficult diagnosis: rhabdomyolysis, a condition triggered by LPIN1, a rare genetic mutation.
The stiffness in Kingston’s arms and legs was the result of the rhabdomyolysis, or rhabdo for short. It’s caused when muscle tissue breaks down and releases harmful proteins into the bloodstream. When rhabdo is suspected, doctors measure a patient’s creatine kinase level. A typical CK reading is about 150. Kingston’s measured 300,000.
There is no treatment, no medication and no cure for this unbelievably rare disease.
There are a number of lifestyle triggers for the condition: not eating food or drinking water often enough, overheating, over-emotion, broken bones and the most common, fever or illness.
After the diagnosis, Jordan began isolating Kingston from any source of germs. He was pulled out of preschool and daycare and outings were severely curtailed. His diet and activities are closely monitored. His brother Jayden knows how to decontaminate himself when he comes home from school. The family keeps two separate sets of towels hanging on the bathroom towel rack.
Kingston has been hospitalized a couple of times since his diagnosis, in those reoccurrences when he’s unable to walk. An unchecked potassium level can lead to kidney failure or cardiac arrest.
On the visit to Missoula, Kingston showed little sign of the disease as he ran from the swing set to the slide to the merry-go-round while his mother and his grandmother, Mindy Bowman, kept a watchful eye. The trip made possible by Make-A-Wish Montana donors and volunteers provided a much-needed break and the strength for the family to make Kingston’s world as safe as possible.
With that support from her family, Jordan stays home full-time to care for Kingston. A former dental assistant, she has taken some college courses, but she says her real education has come as a result of her research into Kingston’s illness.
Because of the rarity of his condition, she says, “sometimes I feel like I know more than the doctors.”
More information about Make-A-Wish Montana can be found at www.montana.wish.org or by calling 406-259-9848.
Story by Susan Cuff, Operations Coordinator at Make-A-Wish Montana