For the Holloway family, mitochondrial disease quickly went from something they had never heard of to a disease many family members would have to work through.
Alicia and Wendell Holloway started looking for answers when their youngest son was missing developmental milestones at six months old.
“I’m an OT, so I started noticing that, not wanting to notice that,” Alicia said. “He was very lethargic. Still sleeping 20 hours a day, very low tone, had some swallowing difficulties.”
In January 2010, when their son was three years old, doctors were still doing blood work to figure out what was going on in his body.
Around the same time, the Holloways were contacted by a foster agency they had worked with before who wanted to know if they would be willing to take in two siblings who had a mitochondrial disease that left them wheelchair-bound.
The foster children were welcomed into the Holloway home in March 2010. A month later, the follow-up appointment for their youngest son showed he also had a mitochondrial disease.
After that diagnosis, the Holloway’s had Alicia and their oldest son tested because it is a genetic disease that is passed on from the mother. Both came back positive.
The Holloway’s foster children have Leigh’s Disease and Alicia and their two sons have MELAS, two different forms of mitochondrial disease.
Wendell said one of the most important things someone can do for his family and others with mitochondrial disease is to understand some of the symptoms — such as extreme fatigue and weakness — are part of a bigger internal issue. He said it is important for him to be his child’s advocate with doctors, teachers and neighbors and help educate those around his family about the disease.
He also said he sees a need for a support system for families like his, but it is hard to take on that task when his family is working hard to make it through each day.
“Our hope is someone who has the heart for these things will stand up and be our champion,” he said.
When it comes to the Holloway family, Alicia and Wendell said their faith has kept them strong, especially for their teenaged son.
“I try to tell him to depend on God for strength,” Wendell said. “I tell him there’s more to this — it’s your opportunity to shine. It’s a chance to learn empathy for others who are hurting.”
(Staff writer Angela Spencer can be reached by email at email@example.com or by phone at 505-1212. To comment on this and other stories in the Log Cabin, log on to www.thecabin.net. Send us your news at www.thecabin.net/submit)