The mitochondria are structures in body cells that produce energy for cell activities. Without sufficient energy, cells cannot function normally. Mitochondrial disease can be inherited or it can occur when a gene mutation occurs, according to information from the United Mitochondrial Disease Foundation.
A Tiffin teen, Alex Sendelbach, was diagnosed with mitochondrial disease as a toddler. His parents, Laura and Cory Sendelbach, along with other family members, have planned the second "Swing for a Cure for Alex" golf scramble Aug. 17 at Seneca Hills Golf Course.
The proceeds are to be donated to UMDF, a non-profit organization founded in 1996. Its mission is to promote research and education for the diagnosis, treatment and cure of mitochondrial disorders and to provide support to affected individuals and families.
Alex Sendelbach is shown playing in the sand at Lake Erie in June.
"He was 14 months when he started having seizures, and he was almost 3 when he was diagnosed. We were lucky. We went to Cleveland Clinic early and they were really good at diagnosing it. But a lot of people don't get a diagnosis early," Laura said.
Alex's local pediatrician referred him to the clinic. Besides seizures, Alex's symptoms included developmental delays and lack of growth.
The UMDF website states the disease may affect hearing and sight and damage the heart, liver, kidneys and endocrine, respiratory and digestive systems.
"I guess there's a lot of variations. ... It's different in every kid. They compare it to the Energizer Bunny with batteries running low," Laura said.
Physical therapy, occupational therapy and speech therapy were prescribed to help Alex overcome some of his disabilities.
He is about to enter seventh grade at Mohawk Schools, where he studies in a multi-handicapped class.
Laura said he likes school and is progressing as well as possible.
She is waiting to see how the disease will affect Alex as he enters puberty. Although he likes sports, he cannot participate in "official" sports. This summer, he participated in Special Olympics for the first time.
"He loved that, but he doesn't have the attention span to do baseball or something like that." Laura said.
Alex has a younger sister who also exhibited some minor symptoms of mitochondrial disease. She takes a "mito cocktail" that is not covered by insurance. It is a supplement of special vitamins that may limit or prevent symptoms.
"When Alex started taking it, his seizures went from 30 minutes to 30 seconds, so it definitely does something for him." Laura said.
Registrations for the golf scramble have been slow in coming. The deadline to sign up is Monday.
Laura said she was
encouraged by the response to the first Swing for a Cure last year.
"It went really well. We only had 10 teams, but we made $3,000 for UMDF, so for our first year, we were happy," Laura said. "I wanted people to know, too, there are going to be some small kids' activities and raffles, so people can stop out. Even if they don't golf, there are other things to do, and they can see Alex."
Check-in for golfers is 8 a.m. with a shotgun start at 8:30. There will be prizes for first-, second- and third-place teams, for the best-dressed player and a prize for anyone hitting a hole-in-one on hole 18.
A cart and lunch are included in the fee of $50 per person or $200 per four-member team. Hole sponsors are still being accepted at $50 each.
For registration and information, visit www.swingforacureforalex.com, email laura1973
firstname.lastname@example.org, or call (419) 618-1779 or (419) 448-4670.