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A ‘Jolt’ for Kids Who Need it the Most

James experiences a “crash” in January and is hospitalized in Florida while visiting Disney.

“It’s a disease that robs the body of energy. I describe my son as the ‘Energizer Bunny’ because he’ll go, and go, and go, and then just crash.”

The most frustrating thing for Hannah Tapley, Mom of child with Mitochondrial disease, was not knowing exactly what was causing her son’s crashes.

According to MitoAction, Mitochondrial disease is an inherited chronic illness that causes debilitating physical, developmental, and mental disabilities. You can be born with it or it can develop later in life. It’s progressive and there is no cure.

“My son, for an example, was diagnosed with seizures first. Then, when he was treated for seizures, that didn’t help him because it wasn’t seizures. He’d been diagnosed with cyclical vomiting because that what it looks like because he vomits a lot. Sometimes in teens, they consider symptoms to be psychologically related like depression,” states Tapley.

“If you think of the body as a little power system, there are little brownouts, like normal tired for most kids, but what these children do is blackout and eventually they can lose vital organ function, as the disease robs the body of energy,” Tapley goes on to explain.

Tapley, like other parents dealing with a mitochondrial disease diagnosis, are learning, as is the medical professional, that maintenance for a person dealing with the disease requires the right balance of rest, hydration, and supplements the body needs to keep replenishing the energy stolen to keep their organs functioning properly.

12 year old Janis Kohlmeyer has struggled with Mito since birth. She has Oxidative Phosphorylation Defect of the Complex I and 1p36 Deletion Syndrome, two very long names for one little girl. While she lacks energy, uses a g-tube, and has developmental delays, Janis is a happy home school learner and enjoys camp and making friends with other kids who understand her.

About 1 in 2,000 people has Mito. Symptoms include poor growth, loss of muscle coordination, muscle weakness and pain, seizures, vision and/or hearing loss, gastrointestinal issues, learning disabilities, and heart, liver, or kidney failure. Mito is also related to autism, diabetes, Alzheimer’s, and Parkinson’s.

You can help raise awareness and money to support research into Mitochondrial disease and children and adults currently diagnosed.

Give A Jolt for James & Janis: A MitoAction Energy Walk will be held Saturday, Sept. 14, 2013 at the Bangor Mall starting at 9am.

For more information, email mitoevents@mitoaction.org or joltwalk@gmail.com, or call 888-648-6228.

 

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