This article was published in Complex Child e-magazine.

Slow-twitch muscles fibers give us endurance, while fast-twitch fibers provide strength and power. Most of us have about the same amount of each type of muscle fiber. When he was two months old, my son Richie had a muscle biopsy that revealed an abundance of slow-twitch fibers, which explained the low muscle tone that was apparent when he was born.

The Effects of Muscle Conditions

CFTD myopathy comes with a tidal wave of problems that could affect Richie. Knowing the potential trajectory of this condition, we focus on riding the wave and addressing these problems as they come up, along with working to prevent the ones that haven’t rushed in yet.

Occupational, speech and physical therapy have been part of his care since birth. Since he was six weeks old, he has worn back braces and casts to correct the curvature in his spine. He uses a stander for weight bearing in order to maintain his bone density and protect him from broken bones. Standing also supports his digestive health, as does his blenderized diet.

Maintaining his respiratory health has always caused some rough waters, starting with the trach he had until a few months ago. Richie uses a cough assist machine and a percussion vest to support his respiratory health, and he has lots of orthopedic devices, like a crawl trainer and a swing, to get his body moving. Much of what we do with Richie has overlapping effects on his health and supports our goal to stave off the negative effects of CFTD myopathy.

I use Pinterest as a resource to keep track of what works for us and to create wish lists for devices and activities that can help us along the way. We are trying our best to dodge the big waves and keep him at optimal health.

We cannot prevent CFTD myopathy from affecting Richie’s life, but we can work with his doctors and other care providers to hold back the tide for as long as possible. So far, we’re hanging ten.