A Young Boy Fighting a Demon

My son learned to crawl this summer. I didn't know if he ever would.

Colin is a beautiful little boy with a demon inside. Myotonic dystrophy, one step removed from big brother muscular dystrophy, hides within Colin's body and saps his strength. A genetic disorder, it weakens his muscles – they call it muscle-wasting – so that every part of his body is compromised: legs, arms, eyes, lungs, heart. Everything.

In the beginning, he couldn't breathe. Colin arrived in this world about as badly as you can, not breathing and not moving.

Because he was premature, an elite team of doctors and nurses were in the room just in case there were complications. My wife and I never expected there would be any, but within minutes of his birth he was fully tubed and a machine was breathing for him. Jenn held her newborn for about three seconds before they rushed him away to the intensive care unit. I think it was days before I even touched him, this tiny 4-pound baby hidden by wires and needles and machines.

Our lives changed dramatically the next 10 weeks that Colin spent in the neonatal intensive care unit at Women & Infants Hospital. I can't tell you enough good things about the wonderful people working there. They create miracles every day. They saved our son's live, and they saved our family.

Every family celebrates milestones. After our first two boys, we knew the milestones well: first smile, first time sleeping through the night, crawling, standing, furniture walking, real walking, disarming the safety gates, leaving toys to cover every square inch of the house.

Colin's milestones were different. He started to breathe with only partial assistance from the machine. Then he breathed on his own. He ate real food – through a tube in his nose. He ate more real food – through a tube in his stomach. He survived two surgeries plus a third trip under anesthesia. Then he went home.

Before he left the hospital, we learned a name for this malady: myotonic dystrophy. Colin has the most severe form, congenital Type 1. We learned he inherited it from our family. We learned the devastating consequences of this monster, which will fight against a child, fight against a teenager and beat down a young adult, until it finally conquers and consumes the adult.

It's a cruel disease. There is no cure.

Yet when our baby finally came home to us, we weren't thinking about those things. We just celebrated the milestone. Our son, his emergency oxygen tank, gastric feeding tube, 24-hour pulse/oxygen monitor and portable fluid-sucking machine (because he could not clear his airways on his own) were finally home.

I'll never forget the first time we took Colin for a walk around the neighborhood. He was packed into a stroller, with wires running to equipment shoved in the compartment beneath. We were terrified to leave the secure bubble of home, but this family needed fresh air.

Neighbors ran out of their houses when they saw. Is this him, they asked? Is this Colin? The women fawned. Mom beamed. It was easy to love this kid, this underdog fighting a demon.

Colin is 17 months old now, and the milestones have been stunning. Colin learned to eat so well, we took out the gastric feeding tube. Of course, the hole in his stomach wouldn't close, so he went back for another surgery.

It took months, but Colin finally gained the strength to sit. He wouldn't go anywhere, but at least he could sit up and play with a toy.

Then he started eating real food, like bananas and peaches and carrots and peas. First we spoon-fed him. Now he grabs food by the handful and shoves it in his mouth. He's done with bottles. He drinks real milk from a cup.

And he learned how to laugh. Sounds simple, but it's not easy. Like breathing and eating, laughing requires a complex array of muscular movements. Because of the disease, he can't laugh for very long, just short bursts of the most heart-soaring laughter you could ever hear.

Then he learned to crawl.

It wasn't easy. It was an excruciating process, fueled by the physical therapist and occupational therapist who come to our house weekly, by his mother and by his team of doctors. It took weeks of failures, with Colin rocking up to his knees, leaning forward and collapsing in a puddle of tears and screams.

Then one day he did not collapse. He crawled over and picked up a toy.

Now he won't stop moving. Like his brothers, he's pulling nightlights out of walls, tissues out of trash cans and food from the dog's dish. I have to baby-proof the house again.

We don't know which milestone will come next. The terrifying question is whether there will ever be one. Will he walk into school one day or will we wheel him in? Will he play sports or watch from the sidelines? Will he go on a date or stay home with Mom and Dad? We don't know. As my wife says, only Colin does.

Now that we're here, with a beautiful baby who's fighting for every inch in his life, we are starting to join the community of myotonic dystrophy sufferers. Today is Labor Day, the day of the Jerry Lewis Telethon for muscular dystrophy. My wife and I are taking part. In fact, you can see us on TV. We'll be answering phones, asking people to donate money so somebody can find a cure.

If you have the means to help, please think of Colin. He's climbed a mountain of milestones, but he has a lifetime of mountain in front of him, and he's fighting a demon. He needs help.

Note: The Muscual Dystrophy Association Telethon and Auction for Jerry's Kids takes place Monday, Sept. 6, until 6:30 p.m. You can watch on TV at ABC-6, or visit www.mda.org directly. Scott Pickering, Patch's Rhode Island regional editor, and his wife, Jennifer, will be taking part in the late afternoon.