When Your Best Friend’s Son gets a Duchenne diagnosis…

Will took my breath away from the second I saw him. “He has dimples!” I shrieked at the video of Will, just a few hours old. I don’t know if I’ve ever been so delighted. When I met Will in person at 5 weeks old, he curled up on my chest and I got to be his first babysitter. He and his mom visited me in New Mexico when he was 6 months old, and we tried (unsuccessfully) to get him to eat green beans. He’s got big brown eyes and a sweet disposition. I can’t wait to see his personality continue to develop as he grows up. Will is the son of my best friend Kati, and he has Duchenne muscular dystrophy.

Kati and I have been friends for almost 15 years, and I can tell you the exact moment we became best friends. We were at our collegiate conference swim meet, waiting behind the blocks for our heat. We were talking to another team and I introduced us as one person, “We’re Kati(e).” We have more in common than our name though; sometimes we have almost identical thoughts. We have only gotten closer as the years have gone by. If I ever needed an advocate, I’d pick her, just like Will picked her to be his Mom.

We haven’t lived in the same state since graduating from college, which means I have had many memorable phone calls with Kati. Over the phone, we’ve revealed engagements and pregnancies, small wins and big heartbreaks. But when Kati called me to tell me Will’s diagnosis, it was like a bomb went off, leaving my ears ringing. A foundation had shifted, and nothing would ever be the same.

When your best friend’s son gets a Duchenne diagnosis, your heart breaks with hers. You grasp for ways to help and support her but come up a million miles short. You don’t always know what to say, but you call anyway. You show up. You listen. You learn. You love.

A friendship that spans decades has to change with the people in it. In the immediate aftermath of the diagnosis, as I worried about Kati driving home safely, I knew she would need a type of support that I could not adequately provide. I felt the best thing I could do was to learn when to step back, and to help Kati and Joe build a community of people who have walked in their shoes. As much as I am used to being her first call, her #1 supporter, her best friend, I want her to be surrounded by people who can deeply understand the pain of a child receiving a DMD diagnosis. I am still muddling through my role in this thing. I’m trying to be a good listener, donate money where it’ll be best utilized, teach my kids about people with different abilities, and to watch from afar as Kati makes connections with wonderful people who are in the same boat as her. These new friends are incredibly important to Kati and Joe’s journey.

None of us knew much about Duchenne muscular dystrophy until the gravity of the diagnosis pulled us all into its orbit. In the months since Will’s diagnosis, Kati and Joe have become near experts and their drive and dedication to finding a cure is admirable. There is so much work to be done and Kati and Joe have rolled up their sleeves.

Will is young, and we’ve got time to cure this thing. A few weeks after Will’s diagnosis, Kati found a necklace that reads “hope over fear.” We didn’t choose this journey, but we can choose to be hopeful. I’ve got enormous hope that, with the right resources and the right people, a treatment and a cure can be developed for Will. And I’ll be there, next to his mom and dad, cheering him (and his incredible dimples) on the whole way. Always.

We will for William.

“There will be times when the world feels like a place that you’re standing all the way outside of…And all that stands beside you is your own brave self – steady as steel and ready even though you don’t yet know what you’re ready for.”

— Jacqueline Woodson

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