Our son Cameron was diagnosed with a rare form of Muscular Dystrophy called Congenital Muscular Dystrophy (CMD) when he was 18 months old. As parents had no idea what this was or what it would mean for our son. Of course every worst case scenario immediately comes to mind. Nights of no sleep, tears of anger, frustration, and just tears until there are no more to come. Why us, why this sweet boy, why why why! Slowly we started to learn more about CMD, and what it would mean for us. We learned that there are many types of Muscular Dystrophy, and even multiple types of CMD. Unfortunately the type that Cam had didn’t have a name. There was no test that he could take to identify his specific type. The beast we were fighting didn’t even have a name! The next 6 months were a blur of Doctor visits, Muscle Biopsy’s, Genetic testing….and still no specific diagnosis.
Shortly after Cam’s 2nd birthday he stopped walking. Cam saw multiple doctors and all agreed that he would most likely never walk again, and may never even stand on his own again. We were devastated! To find out your son will never run, never jump, never know the feeling of running in grass….we cried until we couldn’t cry any more, and then put in orders for a power wheelchair, and had a stander built just for him. We were ready to sell our house and buy something more suited for life in a wheelchair.
In December of 2006 we received a call from one
of the doctors at Rush letting them know that he found a surgeon that was willing to try a risky but potentially rewarding surgery on
Cameron’s hips. We immediately went to see him and weighed all of the benefits and risks. The potential for Cam to walk again, or even to stand was to great to pass up. In January of 2007 Cameron
underwent a long drawn out surgery, called a bilateral hip release, followed by 4 weeks of rehabilitation at Hope Children’s Hospital.
We were thrilled to see the progress Cam was making, and hoped he would be able to stand at least. Cam looked at us one night and told us he would walk to his first day of school, and much to our surprise, as well as every doctor he saw, in late February 2007 Cameron walked again! The only one who wasn’t surprised was Cam. He just knew it would be that way.
Cam was able to walk, although slowly and sometimes with assistance for a few years to come. However time does not stop for anyone, no matter how much you beg, and in 2012 Cameron started to grow and his body just couldn’t keep up. Cam is now a full-time wheelchair user.
The last two years have really tough on our son. Cameron underwent 2 different major surgeries, almost 5 weeks of inpatient hospital stays, and continuing weeks of day rehabilitation, outpatient rehab, and other therapy. Cam has gone from only using a manual wheelchair some of the time, to needing 5 or 6 different pieces of medical equipment/devices everyday just to get around and maintain his health.
Our road has not been an easy one for sure. We have tested the boundaries of understanding, faith, and love for each other through this process. We still don’t have the name of this CMD monster we are fighting. There is still days of tears and frustration, and sadness. However, there is one truth we have come to realize 100%. We are only as strong as we choose to be. No matter the obstacles we face, we can overcome them together, as a family, and as a Crew. This is the meaning of Cameron’s Crew, this is what you, all the people that constantly remind us we are not fighting this battle alone, have given us.
♥ Cam, Kevin, Elisha, and Victoria
“This is my simple religion. No need for temples. No need for complicated philosophy. Your own mind, your own heart is the temple. Your philosophy is simple kindness.”
― Dalai Lama XIV