Hope Against the Odds: A 4-year-old's battle with Mitochondrial Disease
By CELESTE GRACEY
Issaquah Reporter Staff Writer
August 27, 2012 · Updated 2:38 PM
A 1.65 mile family run for Calvin Berstch is scheduled for 4 p.m., Aug. 26 at Meerwood Park, 4703 192nd Ave. S.E., Issaquah. It’s $10 per person or $25 for a family, and people can sign up at the event. Treats and beverages will be served after the race. The Berstch Family has a website, where donations can be made.
Already the mother of two premature babies, Tricia Berstch knew what developmental delays looked like. But her newborn son, Calvin, was struggling with something more.
It wasn’t just the hole in his heart, sleep apnea or eyes so crossed he’s needed two surgeries. He slept so long she could hardly wake him to eat, and his acid reflux was so severe he needed feeding therapy.
Calvin would turn two, before doctors would discover he had Mitochondrial disease (Mito). His cells don’t produce enough energy, often sending him into metabolic crisis.
In a few hours he can go from a happy 4-year-old running around a park to a catatonic state with a 104-degree fever. To help the Lakemont family with his medical care, which has put them in financial hardship, friends are hosting a Fun Run in Issaquah on Aug. 26.
Although regular hospital stays were a part of Calvin’s life from the beginning, it took a crisis to discover the disease.
To help with Calvin’s sleep apnea, surgeons removed his tonsils and adenoids. Normally kids wake up within an hour of the procedure, it took Calvin a couple days. Too weak to even eat, he remained in the hospital three weeks. By then the toddler’s walking turned to crawling. His few words became a babble. Two years of therapy were lost.
“I was begging desperately for someone to help us,” Tricia recalled.
It was then Calvin had a muscle biopsy to test for Mito. The results were an utter heartbreak.
There is only a 20 percent chance that he’ll live past his teen years. The older he gets, the more problems he could get, but it hasn’t gotten in the way of Calvin’s joy for life.
In the family home, giggles bounce off the second-floor ceiling as Calvin and his older siblings tickle each other until they squeal.
The energy of their laughter drowns their parent’s hushes, and only another activity tempts them to skip from the bedroom.
Today is a good day, or at least a good afternoon. With Calvin, good days aren’t expected, only remembered.
“You watch him on days like this and you think, maybe he’ll be in the 20 percent,” said Brian, his father, “but you have no idea.”
Tricia remembers one hospital visit this year where he was struggling so much, she told him if he needed to stop fighting, that it was alright. He could go.
“He’s strong willed, and that’s good for him,” she said. “I just hope he can have this zest for life and not be bogged down by all this medical stuff. I hope that he can love life, and love people.”
Calvin’s diagnostic journey has been long, and it’s far from over. At two he received a feeding tube. He has to use the machine while he sleeps, because he can’t go longer than three hours without sustenance.
This year he was diagnosed with seizures. His siblings call it “brain freeze.”
He’s also beginning to have cognitive problems, which could be caused by a second disorder. They’re hoping the fun run Sunday will raise enough money to pay for the genetic testing to determine the cause.
It’s also encougaring, Tricia said. Last year, “I looked out and saw a community of people, and I realized our family was not alone.”
Calvin Berstch with his parents Brian and Tricia. BY CELESTE GRACEY, ISSAQUAH & SAMMAMISH REPORTER
Four-year-old Calvin Berstch, right, was diagnosed with Mitochondrial Disease, a rare illness that takes 80 percent of patients before they leave their teenage years. He's pictured playing in his home with Lightning, a favorite toy car. BY CELESTE GRACEY, ISSAQUAH & SAMMAMISH REPORTER
Four-year-old Calvin Berstch, right, was diagnosed with Mitochondrial Disease. He’s pictured with his siblings Audrey, left, and Caiden at their Lakemont home. BY CELESTE GRACEY, ISSAQUAH & SAMMAMISH REPORTERContact Issaquah Reporter Staff Writer Celeste Gracey at firstname.lastname@example.org or 425-391-0363.