Clear Lake volleyball team plays for a good cause

(Above) The Clear Lake volleyball team dedicated its play Tuesday night to Mitochondrial Disease in memory of Jace Smith -Reporter photo by Chris Barragy

The Clear Lake volleyball program dedicated its play to Mitochondrial Disease and in memory of Jace Smith Tuesday night in their match with Clarion-Goldfield-Dows.

Smith, the 13-year-old nephew of Clear Lake Head Volleyball Coach Jill Smith, died from a genetic disorder in April.   The Waverly-Shell Rock student passed away from complications from mitochondrial disease at the Mayo Clinic after 11 weeks in a medically-induced coma.

Coach Smith explained that for several years, Jace had been experiencing absence seizures and other dystonic episodes. Until February 2016, no one really understood the gravity of his situation. On Feb. 19, Jace awakened his parents in the middle of the night. He was  unable to swallow or talk.  He was taken to the emergency room, where he was put on a breathing machine to ensure that his airway was protected. He was air lifted to Mayo clinic for further treatment.

Once at Mayo, tests showed that Jace was having repeated seizures.  Unable to control the seizures any other way, the decision was made to put Jace into a medically induced coma to ensure that his brain would get the rest it needed in hopes of it restarting without a seizure. Jace remained in a medically-induced coma for 11 weeks, at which time an MRI revealed that his brain was no longer functioning.

Genetic testing showed one mutation on a single gene, which caused a partial mitochondrial disruption. Jace’s body was unable to generate the energy it needed to grow and/or sustain life.

“Volleyball for Mitochondrial Disease is one way in which we can continue to make an impact in honor of Jace,” said Coach Smith. “While we may be competitors on the court, we can be comrades in the fight to end mitochondrial disease.”

Schools participating in “Volleyball for Mitochondrial Disease” in 2016 include: Clarion-Goldfield-Dows, Clear Lake, Coe College, Denver, Garner-Hayfield-Ventura, Janesville, Nashua-Plainfield, New Hampton, North Butler, Riceville, Wartburg College, Waverly-Shell Rock.

To date, proceeds from T-shirt sales have raised more than $3,500 for the United Mitochondrial Disease Foundation.  At Clear Lake’s volleyball match Tuesday night there was also a bake sale and additional fundraising activities.   

Mitochondria exist in nearly every cell of the human body, producing 90 percent of the energy the body needs to function.  In a person with mitochondrial disease, the mitochondria are failing and cannot convert food and oxygen into life-sustaining energy.  Each year, 1,000 to 4,000 children in the United States are born with a mitochondrial disease.   While exact numbers of children and adults suffering from mitochondrial disease are hard to determine because so many people who suffer from mitochondrial disease are frequently misdiagnosed, we now know the disease is approaching the frequency of childhood cancers.  Many are misdiagnosed with atypical cerebral palsy, various seizure disorders, childhood diseases and diseases of aging.  Still others aren’t diagnosed until after death.

The prognosis for individuals with mitochondrial disease depends upon the severity of the disease and other criteria. As more research dollars are raised to find more effective treatments and ultimately a cure, some of the affected children and adults are living fairly normal lives. In other cases, children may not be able to see, hear, talk or walk. Affected children may not survive beyond their teenage years. Adult onset can result in drastic changes from an active lifestyle to a debilitating illness in a short amount of time.

“During Jace’s 13 years here on earth, he lived life to the fullest! Jace was perseverant, courageous, outgoing, optimistic and cared for others - especially his family. Daily he fought a battle of which no one was aware. Through it all, he kept a smile on his face!  Jace’s absence is felt not only by his family and close friends, but throughout his community. His time here, while too short, impacted many, many people. It is the hope of his family that although he is no longer with us physically, his life continue to make an impact.”

Jace’s family was on hand at Tuesday night’s match to address the crowd and thank all those supporting Volleyball for Mitochondrial Disease.