welcome to DuchenneXchange

- a positively charged Duchenne muscular dystrophy community.
  • join today!

A Different Kind of Normal

A Different Kind Of Normal
A Different Kind Of Normal
Emily Cook

My mom says that from the day I was born my brother was always mesmerized by my face. As a 3-year-old, he would constantly touch my face, make silly faces to get me to laugh and he sincerely loved me. Of course, I don’t remember these details, but I do remember details of some experiences we shared together when we were younger.

One memory is Christmas. Wil would sneak into my room late at night after we heard Santa leaving presents under the tree. We would excitedly stay in bed wide awake waiting for our parents to wake up. 

emily and wil

I’ve always looked up to my brother and enjoyed spending time with him. I don’t exactly remember when he was diagnosed with Duchenne, but I do recall wondering what was happening to him. I remember going with him to many doctor appointments, even flying to some and sometimes seeing other boys in wheelchairs. I also remember when he got a scooter to use at school and when we went to the mall. I remember watching him fall and my parents picking him up from the ground.

As the years have passed, I’ve watched him lose the ability to run and walk. But the one thing that has never changed is that he is my big brother and I look up to him. I am in awe of his positive attitude and mental strength.

There have been times when I have been so upset with Duchenne and all that it has taken away from Wil, me, and my family. We are unable to experience family vacations like my friends. We are unable to make last minute decisions to go away for a weekend. There are many things we are unable to do.

But then I contemplate on my relationship with my family and how it compares to my friends. My family truly experiences life and all that it has to offer. We do not take things for granted and we know how to celebrate every day like it’s our last. We laugh together. We eat dinner together. We make decisions together. We’re a close-knit family.

Wil and I went to the same school from the time I was in kindergarten until 4th grade when he moved to middle school. It saddened me not to be at the same school as him, but at least my friends all knew who he was. When my family relocated to Texas, Wil was homeschooled and I started middle school. At first, I was adjusting and didn’t think anything of it, but as the year went on, I begin to realize that nobody even knew that I had a brother. I didn’t like the way that made me feel. I wanted everyone to know him, to know that I was Wil’s little sister.

emily and wil in 2019

In 8th grade, I decided to create a t-shirt campaign to raise awareness and money for CureDuchenne. This action was therapeutic for me. The slogan on the back of the shirt said, “Where There’s a WIL ~ There’s a Way.” Seeing those words on the back of so many shirts on campus finally made a connection to his existence. It was an amazing and uplifting experience. It felt so good to be known as Wil’s little sister again.

I grieve and struggle with Duchenne as do my parents, but I certainly don’t want to be defined by the disease. I just want to be Wil’s little sister. My perseverance to succeed has been shaped by witnessing Wil’s ability to remain positive throughout the progression of Duchenne. He inspires me to be the best version of myself.

Who is your inspiration?