Sarah Knight never thought she’d be in this position.

Having already lost one young son to a rare disease, she recently found out that another of her four children, Oliver, has the same type of disease − a mitochondrial disorder that now affects as many kids as cancer. One in every 3,000 children is diagnosed every year with some form of mitochondrial disease.

Photo: Susan Knight poses with a picture of her son Cooper and a couple of his favorite stuffed animals, during the Cooper Knight Memorial Static Air Show held Oct. 8.

Sarah’s son Cooper was diagnosed with a rare form of the disease called Mitochondrial Depletion Syndrome, which prevented his digestive system from working. Cooper had no appetite and was forced to be fed nutrients from a line that went into his chest, from a heavy backpack, which held the nutrients he needed.

“If we didn’t have faith at this point I don’t know where we’d be or how we would cope,” Sarah said.

Cooper had numerous surgeries and a colon and bowel transplant. Cooper’s body rejected the colon, leaving the family with no options and losing hope.

It’s exhausting putting up a façade that we are a-ok,” said Sarah. “At the end of the day you have to make yourself alright though, or you can’t function.”

Cooper continued to fight but ultimately doctors decided there was little left that they could do, so Cooper went home. It was at home that Cooper died in his mother’s arms, but not before one last ride.

Cooper had a children’s jeep that he would ride around his neighborhood. He was a bit of a daredevil who enjoyed airplanes and things that went fast.

“He got on that jeep (the day before he died) and sat there for awhile,” Sarah said. “Then, all of a sudden he stomped on the gas pedal and took off.”

“Before he died he never complained − he never gave up,” his grandmother, Susan Bollfrass said.

By the next day he would be gone.

During the time of Cooper’s treatments, the family decided to hold a static air show at Hooks Airport, in order to raise funds to help offset the costs of his treatment. After Cooper passed away they decided to continue holding the event, in order to raise money for mitochondrial disease research. This year’s event was held Oct. 8 at Hooks Airport.

All money from the event was donated to the UT Mitochondrial Clinic at the Children’s Memorial Hermann Hospital.

“We just want to do our part in raising money and bring some awareness to the disease,” Bollfrass said.

The family held a silent auction and raffle, as well as helicopter rides, children’s events and an old Russian MiG fighter plane was on site.

Tomball City Councilman Derek Townsend, a long time family friend, turned out to lend his support.

“I’ve know (Bollfrass) since I was younger,” Townsend said. “This is just a devastating disease. Finding a cure for this insidious disease is something that has a lot of merit.”

Knight said this event is something she will continue to hold, no matter what challenges are around the corner.

“I am completely committed to continuing,” she said.

To donate you can send a check to the UT Mitochondrial Center of Excellence, 6431 Fannin, MSB 3.153, Houston, TX, 77030.

Photo by Caleb Harris

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