Having a muscular disease is a challenge, particularly when you’re part of a family whose collective energy is uncontainable. And especially when you’re a hockey-loving second-grader who wants nothing more than to run, play, and keep up with your friends.
Cohl’s parents, Kerri and Nick, and sister, Ava, are lovely people – brimming with energy and all the wacky, funny goofiness of a family that takes life in stride and makes the best out of any situation. I asked Kerri to tell me about Cohl. She took a short breath in and said, “Cohl has a muscle disease.” Then, immediately and with a big smile, “He‟s the funniest kid you’ll ever meet. He is happy. Hockey is his thing. He watches hockey, plays sled hockey, he lives for hockey. His whole bedroom is New York Rangers.”
Kerri’s description perfectly illustrates that while Cohl’s disability has always been a part of his life, it doesn’t define him. Kerri said its effect on Cohl is akin to how we would feel if we did everything with ski boots on, knowing they could never come off. When he walks in the door you might not even notice he has a problem. But if you saw him run, or try to walk up stairs, get up off the floor, or out on the playground at recess – you would see that he’s slower and weaker than everyone else. He fatigues very quickly. He has a tremor in his hand. His condition also affects his arms and his jaw.
Besides the physical limitations Cohl’s condition creates, it used to make him sad. This sadness is why a school counselor suggested Kerri and Nick bring him to Families First. While counseling was the initial impetus, Kerri feels the support the family receives through our Partners in Health program has had the biggest impact on Cohl.
Our Partners in Health program coordinator Kerry Murchie helps families with children who have a chronic health condition like cancer, cystic fibrosis, type 1 diabetes – or, like Cohl, slow myosin muscle fiber deficiency. Kerry shows parents how to advocate for their children. She helps them access resources and navigate the maze of insurance companies and medical providers.
Of vital importance to her work is making sure each child is set up with the appropriate educational program. Every child’s needs are different. Kerry may go with the family to explain the child’s strengths and limitations to the school community, she may attend an appointment with a specialist to serve as another “set of ears” for the parents or, as with Cohl, she‟ll schedule fun activities where he can go at his own pace and get the regular exercise he needs to keep his muscles from atrophying.
“Families First stepped in and helped us locate activities that will keep Cohl active and his muscles strong,” said his mom. “They assisted us with the cost of registration for baseball, sled hockey and horseback riding therapy. They paid for our pool passes so we can keep him swimming all the time. There‟s no way we could’ve done all of these programs without Families First.”
Kerri’s face conveyed for a moment, only a moment, the weight of the years and overwhelming complications that chronic illness in a child can bring to the family. “I find it hard to ask anybody for anything, but this is my kid and I need to make sure I‟m doing everything I can. It’s so nice, a relief, to be able to say to my son, ‘Yes, you can play baseball,’ especially since it’s going to help him. And Families First has helped him. It’s helped tremendously – physically and emotionally.”