A Magazine from Akron Children's
Every family is unique, and so are their health care experiences. In “The parent’s perspective,” you’ll learn about amazing patients from the people who know them best.
We noticed something was different about Nolan when he was learning to stand. He struggled with simple motor skills, and even physical therapy wasn’t enough to get him on track. As a special education teacher, I’m all about early intervention, so we decided to see a neurologist.
And that’s when our lives changed forever.
At 2 years old, Nolan was diagnosed with Duchenne muscular dystrophy, a genetic disorder that causes progressive muscular degeneration.
We were devastated. We felt robbed of the life we had dreamed about. Questions like, “Why us?” and “Why our baby?” echoed through my head each day. The grief ran deep. It was a very difficult time in our life, and I struggled to see any light through the darkness.
But, over time, I realized that the true light in my life was my sweet, silly, bright boy. Nolan has never let his disability get in the way of his happiness, so we decided to do the same. Instead of focusing on our grief over losing the life we had expected, we chose to find the joy in the life we were given so that we can be the best parents to Nolan and his baby brother, Reed.
Now Nolan is 6 years old, and while he knows he is different, we emphasize his many strengths rather than his disability. Through building his confidence, teaching him emotional regulation and how to persevere through hard things, I like to think that maybe he teaches us to do the same.
When Nolan was 4, we were informed of a life-changing gene therapy at Akron Children’s. His team in the Neuromuscular department advocated for him to the insurance company, and we will forever be grateful that they worked so diligently to get him this treatment. After years of hearing there was no hope for improvement, Nolan received the treatment in 2024. Since then, he has already taken great strides in his functioning.
Nolan, 6 years old, began a gene therapy treatment for Duchenne muscular dystrophy two years ago at Akron Children’s.
Nolan gets the laughter going for the Riffe family: Kailey, Reed, Nolan and Michael.
Today, Nolan’s big personality is one of the brightest lights in our life. He loves to learn, play and build things — and he gifts us with belly laughs almost every day. His witty sense of humor and creative spirit only grow with him as he gets older. And he is an amazing big brother to Reed and is always sure to include him in everything.
While I still struggle to talk about Nolan’s diagnosis, focusing on the joy he brings and leaning on a strong support system of friends and family has helped a lot. I have also been able to connect with other families through Akron Children’s. I even helped start the Sharpsville Inclusive Play & Accessibility Fund. As a special education teacher at the school Nolan attends, I know how difficult our playground is for Nolan and other students with disabilities to navigate. Our goal is to build a brand-new, all-inclusive playground on the school grounds — so all students can play together safely and collaboratively.
To any parent who is facing a life-altering diagnosis, these changes may feel extremely dark and devastating. It’s OK to grieve and mourn the loss of what you thought would be. But when you take things day by day, you will find light in the things that make you feel positive and hopeful.
Duchenne muscular dystrophy is a part of Nolan’s life, but it is not his whole life. As his mom, I know that he wants what every other child wants: to be loved, included and enjoy his life. That’s why I teach my boys to have compassion and empathy and to embrace people’s differences, even if they’re hard to understand. Because my dream is for my sweet boy to live in a world that treats him with the love and respect that he — and everyone — deserves.
From inspiring stories, to medical miracles, the More childhood, pleaseTM magazine will make you appreciate those precious 6,574 days of childhood.
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