By Gina Rader, Wichita
In 2007, after 18 months of cross country travel, numerous tests, muscle biopsies and a lot of waiting, we finally received a diagnosis of mitochondria disease for our 3 year old son Grant. All the while, enduring speech, physical and occupational therapy, rigorous vitamin schedules—leading to unpleasant side effects and of course, more doctors’ visits and arguments with insurance, we were learning about the disease that effects our son’s muscular and growth ability and energy levels, and educating ourselves and others how to spell this disease that affects almost 4,000 children born every year.
It didn’t take long for us to master the mitochondria world, partly because there wasn’t a lot of information out there. We were able to connect with community supports like Children’s Miracle Network and the MDA camp for help and activities for Grant. Through friends and organizations like the Wichita Thunder Hockey and our favorite radio DJ, Rockin’ Rick, Grant has been able to take a trip to Disney World, Washington, DC and play hockey—his favorite sport. We became fierce advocates for these causes and families like ours.
We are still inundated with therapy and doctor’s appointments, IEP’s, and plagued with illness during flu and cold season, but Grant’s humor and spirit keeps our family moving forward. We treat him the same way we do his older very active and healthy sister, Angela. This has been a cornerstone for our family. No exceptions are made for messy rooms, being rude or mean, not following rules, or late homework. Ultimately, Grant’s ability to work and play, in school side by side with his peers is because we give him the same opportunities and refusals. Grant doesn’t make excuses, nor do we.
The journey has not been easy. Like many other diseases, the ones you can’t spell are often not covered by insurance and even the best of professionals have no idea how to help. We were in the early stages of all of this when I attended a Families Together Conference at the behest of a family friend who was also raising a child with special needs. This conference would prove to be invaluable, as Grant’s milestones became harder for him to hit and intervention services would be necessary in school. Visiting with other parents facing the same challenges is also a great comfort and resource and we were quickly able to become supporting parents in the Families Together Parent to Parent Program.