|By Kaitlyn Schroyer|
CHICOPEE Not many people know what Mitochondrial Disease is or how to cope with a child diagnosed with it. However, there is help and it comes from someone that knows the road all too well.
Dan Genie's 10-year-old son Cameron was diagnosed with Mitochondrial Disease (MD) when he was only a little over one year old. MD is a failure of the mitochondria, the parts of cells responsible for creating more than 90 percent of the energy needed by the body to sustain life and support growth. A failure of the mitochondria results in symptoms such as loss of motor control, muscle weakness and pain, gastro-intestinal disorders and swallowing difficulties, poor growth, cardiac disease and many other illnesses.
"We want to get the word out and supply people with information," Genie said. "It's all about a proactive approach. Whether it is more information on how to get their child diagnosed or learn doctor contacts, we want to help. So we started the Fundraiser for Cameron."
Cameron was very lucky when diagnosed at Baystate Medical Center.
"At a little over a year, he wasn't walking and had a long cold. We also noticed he was falling on his face and couldn't hold himself up. We knew something was wrong. We were very lucky to find a neurologist who had enough insight to check for Mitochondrial Disease," Genie explained.
Today, Cameron is legally blind and uncoordinated. He is also underdeveloped and a slow learner, but his bright personality shines through.
This year is the fundraiser's fifth year. It has raised a total of about $40,000 since its creation in 2005. All the money goes to the United Mitochondrial Disease Foundation (UMDF). The UMDF is responsible for promoting research and education for the diagnosis, treatment and cure of mitochondrial disorders, and to provide support to all those involved.
Taking place on July 25 at the Moose Family Center, 244 Fuller Rd. in Chicopee, the fundraiser will include picnic-style food, a live band, a DJ, clowns, bounce houses and a cash bar. There is also a playground available for use.
"There is only a $10 donation," Genie said. "Just show up and have a good time."
All those interested in learning more about Mitochondrial Disease and the foundation are encouraged to visit www.UMDF.org.
|9/12 (5 days)||Texas On Tour Mobile Experiential Exhibit Visits The Big E|
|9/16||At Home in the Woods Summer Camps|
|9/16||Wiggles & Giggles ( Mommy and Me Class)|
|9/16||Bereavement Support Group|
|9/16||Free Program for Veterans|
|9/17||At Home in the Woods Summer Camps|
|9/17||TRUCK STOP TROUBADOURS "The Regional Champions of Classic Country & Rockabilly Music" At The Storrowton Tavern.|
|9/17||Cleanse & Detox Class|