Families organize Issaquah run to help boy battling rare disease
April 14, 2011
NEW — 1 p.m. April 14, 2011
Families in the neighborhoods along the southern shore of Lake Sammamish plan to gather Sunday for the Calvin Bertsch Rainbow Fun Run, to honor the life of a 3-year-old boy bravely battling mitochondrial disease.
The 1.67-mile family run starts at 3 p.m. at Meerwood Park, 4703 192nd Ave. S.E., rain or shine. Organizers recommend donations of $10 per person or $25 per family in order to offset the family’s mounting medical bills.
Calvin arrived Nov. 19, 2007 — almost seven weeks earlier than the expected due date.
“My entire pregnancy was complicated,” mother Tricia Bertsch said. “Calvin was actually our third preemie, so I was familiar with the NICU. However, he was my sickest baby yet.”
For the tiny baby, the health challenges started immediately.
Calvin arrived with a ventricular septal defect hole in his heart and, at 3 days old, his lung collapsed and a chest tube had to be inserted.
In the first six months, Calvin received a diagnosis of the ocular condition infantile esotropia, underwent eye surgery and had to be fitted for glasses.
When Calvin turned 1, his health started to fail, and he had to be hospitalized in January 2009 for RSV and again for rotavirus in May 2009.
“With every small bug that children pick up, we noticed Calvin had to fight harder,” Tricia Bertsch said. “His body was unable to maintain his hydration and nutrition, and he would become catatonic. We found ourselves in the [Seattle] Children’s hospital ER over and over again for IV fluids and nutrition.”
Following a setback after a tonsillectomy, doctors conducted a barrage of tests — head CT, EEG, MRI and blood tests for genetic and metabolic disorders. Finally, last July, Calvin was diagnosed with mitochondrial disease.
The disease results from failures of the mitochondria, a specialized compartment present in almost every cell of the body except red blood cells. Mitochondria create more than 90 percent of the energy needed by the body to sustain life and support growth.
When mitochondria do not function correctly, organs start to suffer. Depending on the affected cells, a child can have strokes, seizures, gastrointestinal problems, blindness, deafness, muscle failure, diabetes, developmental delays, heart and kidney problems, immune system problems and liver disease.
The family’s home presents a possible danger to Calvin as well.
“We recently found out that our home could be creating more dangers for Calvin,” Tricia Bertsch said. “It turns out the glue in the carpet can be toxic to children with mitochondrial disease.”
Now, the family faces the costly replacement of all of the carpets with tile. In addition, mitochondrial disease has taken a financial toll on the family through the constant cost of occupational and physical therapies, doctor’s appointments, surgeries and hospital stays.
No cure exists for “mito,” as the disease is sometimes called, and the mortality rate is roughly the same as childhood cancer — 80 percent of kids diagnosed with mito die before turning 20.
Calvin’s family hopes he can beat the odds.
“There is something about him that just lights up a room,” Tricia Bertsch said. “That is what gets me through even the toughest times.”