For the love of Pete: Challenging what it means to live with SMA

16 Jul
Allyson and Tim Henkel with Lucy, Ian, Chris, and Pete at Expo 2015 in Milan.

Allyson and Tim Henkel with Lucy, Ian, Chris, and Pete at Expo 2015 in Milan.

Pete and his twin sister, Lucy, were born 11 years ago into our very busy family. We already had two boys, Ian and Chris, and had learned to expect kids to develop in a certain way. But by the time Pete was a few months old he moved really slowly, just his upper body, and looked really uncomfortable.

At first I was curious and just kind of Hmmmm. But when he was six months old I decided to bring it up with his pediatrician. The doctor kind of waved me away, wrote a prescription for physical therapy, and told me he was fine.

Pete wasn’t fine and neither was I. It’s miserable to suspect something is wrong with your child and not know what it is. You can’t rally around the problem, you can’t fundraise, you can’t embrace anything.

“We reacted differently. My husband lay on the floor. I called people.”

Pete lost his ability to roll over a few months later and the physical therapist recommended we see a neurologist. The doctor tested our son, who was nine months old by then, and asked us to come to her office.

I wish I could tell you otherwise, she told us. But it’s most likely spinal muscular atrophy. These babies don’t usually live past their second birthday.

Spinal muscular atrophy, or SMA, is a genetic disease that affects the motor nerve cells in the spinal cord and eventually takes away the ability to walk, eat, and breathe. It’s the number one genetic cause of death for babies.

My husband, Tim, and I reacted to the news very differently. He lay down on the floor and couldn’t move. I immediately started calling people.

“He’ll be fine. As long as he can play he’ll be happy.”

All these years later I still remember how people reacted – or maybe I only remember the comments that were helpful.

We’ll put stickers on his wheelchair, my neighbor told me.
I know a child with SMA who is nine years old, another friend said.
He’s going to be fine. As long as he can play he’ll be happy.

It was such a relief to hear that last response, which came from the genetic counselor we met with. What she said has shaped the way we’ve raised Pete.

We’ve put stickers on his wheelchair and taken him parasailing, skiing, and snorkeling. He’s traveled to Costa Rica and Bonaire and this year we went to Italy. He’s about to enter sixth grade and has his own group of friends. He and his sister, Lucy, regularly go to the neighborhood pizzeria on their own, without me. Pete gets to enjoy many of the same privileges of being a kid as his sister and brothers do.

Recently it’s become harder for him to keep up. Pete’s having more trouble using the joystick on his power wheelchair and to bring him to Italy we had to carry an oxygen concentrator, which helps him breathe more easily, along with a ramp.

Coming up with accommodations is sometimes a headache. But we want him to live while he’s here. I hope he has a good long life but you don’t know.

“People feel good when they embrace a kid like Pete.”

I’m involved with the Philadelphia chapter of Cure SMA and we encourage anyone who’s planning to have a child to get carrier screening so they can make the right choice for their family. I know there are people who will decide not to have a child. But getting the information early also gives you time to do the research and prepare to live with a child with SMA. When I talk to people who have just gotten a diagnosis I try to give them as much hope as possible.

Having a child like Peter is humbling but I’ve learned more from being his mom than from anything else in my 46 years. So many people have contributed to his happiness. And he has given back. People feel good when they embrace a kid like Pete so his story is a happy one. Even if Pete’s life is short it has served a huge purpose.

– Allyson Henkel

Allyson Henkel lives in Philadelphia with Tim, a real estate developer with a focus on affordable housing, and their four children, who range in age from 11 to 16. She just left her job as a Spanish teacher and plans to focus next on working with the children of Latin American immigrants. She’s very active in her local chapter of Cure SMA, which hosts Walk-n-Roll and Muscles for McKenna. Counsyl helped sponsor this year’s fundraising event. Allyson’s story is part of the Counsyl Storytelling Project, which highlights the role of DNA testing in people’s lives.

One Response to “For the love of Pete: Challenging what it means to live with SMA”

  1. Azalia volpe July 20, 2015 at 7:52 am #

    My brother lived with this disease until the age of 49 during that time period he lived a full life , had a job, 2 children and traveled extensively.

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