Duchenne Muscular Dystrophy

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I'm new here!

Hi everyone, I’m Jack — a writer from London, UK.
I recently finished a memoir about my brother Sam, who lived with Duchenne Muscular Dystrophy. Sam was my best friend, and losing him changed everything. I’m here to share our story and connect with others who understand the messy, beautiful reality of grief and love that never really ends.
I also live with ADHD, which adds a whole extra layer to navigating loss.
If you’ve lost someone you love, what’s one thing you wish people understood about your grief? 💙
#MightyTogether #Anxiety #Depression #ADHD #Grief #DuchenneMuscularDystrophy

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Bafusfamily4

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@bafusfamily4

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What It Felt Like to Advocate for Our Sons With Duchenne on Capitol Hill

When our sons were diagnosed with Duchenne muscular dystrophy, we felt like our world had collapsed. First our oldest, then—just when we thought lightning couldn’t strike twice—our youngest was diagnosed too.

We were scared. We were grieving. And we didn’t know where to start.

But one thing became clear quickly: if we wanted a better future for our boys—and other families like ours—we couldn’t stay quiet.

This year, my husband and I flew to Washington, D.C. to speak directly with lawmakers. We asked for continued funding for research. We pushed for policies that protect families with medically complex children. We carried not just our sons’ stories, but the weight of every family walking this road with us.

We documented the experience in a short video—not to promote ourselves, but to show what rare disease advocacy really looks like when it comes from the heart. We hope it helps others feel less alone, and maybe even inspired to share their own story too.

youtu.be/P2BRFHa4ngw

We’ve also started sharing more about our journey on YouTube, in hopes of reaching other families navigating this life. If this resonates with you, we’d love to have you join us.

Because none of us should have to do this alone.

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Bafusfamily4

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@bafusfamily4

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I’m new here!

Hi, my name is Bafusfamily4.
Mom of two boys living with Duchenne muscular dystrophy. Alongside her husband, she shares the raw, real, and hopeful moments of their journey on YouTube at The Bafus Family, creating a space for other rare disease families to feel seen, supported, and never alone.
#MightyTogether

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Evolution of a PhD

I’ve lived with DMD for over 30 years and the progression has been relatively slow. I was 2 years into a postdoctoral fellowship after earning a PhD in engineering. Things were turned upside down in December 2021 when I was hospitalized with a septic gallbladder. This was the first time I had ever been through surgery of any kind. I was intubated and then fitted with a feeding tube, which prevented me from speaking. After 45 days and a tracheostomy, I was finally discharged to my home with a portable ventilator. Not to mention a hairline fracture in my hip.

In the last year and a half I’ve been through a long rehab process and I am able to talk, eat, operate my power chair, and just made my first overnight trip in 2 years. Since I’ve been unable to work with much more downtime, I decided to start reevaluating myself and my situation. I started volunteering for nonprofit organizations helping other people with disabilities and it has been amazing! I’ve reconnected with elementary school friends who I haven’t talked to in 20 years. I joined online dating sites to search for a partner (ongoing) and started to ascertain my ability to potentially have children once I find the right woman to have a family with.

None of this is to say I regret my graduate work or years before my surgery. I’m thankful for all the work and sacrifices loved ones and colleagues made during my years at the university where I worked. However, I’m now finding that there are many areas of my life that were lagging that mean too much to be ignored. One of these areas is mental health. After all, my time in the ICU took me to extremely dark places that I still have trouble avoiding at times. I am excited to join The Mighty to share my story and to provide help to others who want or need it!