Courtney B. Cap and Gown Senior Photo
Courtney B.'s Cap and Gown Senior Photo

MDA Ambassador Guest Blog: How My MG Journey Has Shaped Who I Am Today

5 Second Summary

MDA Ambassadors play an essential role in furthering MDA’s mission while representing and empowering the neuromuscular disease community. Quest Ambassador Guest Blog series provides a platform to share their personal stories, perspectives, and experience.

Courtney B. is a passionate advocate for living life to the fullest despite the challenges that come with chronic illness. A high school senior from Indiana, she is an early graduate, a cheerleader, a lifeguard, and a law intern — all while managing the complexities of multiple health conditions, including myasthenia gravis. After being told at age 9 that she had only two years to live, she has defied expectations and learned that strength comes from both faith and resilience. Courtney is driven by a deep belief that one’s purpose is not determined by the obstacles they face, but by the courage to keep moving forward. She hopes to inspire others by showing that with determination, faith, and a heart full of hope, anything is possible.

Life doesn’t always go the way we expect.

That’s something we all learn eventually, but for those of us with chronic illnesses, it feels like the world can change in an instant. You’re walking down one road, and suddenly — without warning — everything shifts. That’s how it felt when I was diagnosed with myasthenia gravis (MG) at nine years old.

Keeping faith against all odds

Courtney B. in the hospital getting long treatments

Courtney B. in the hospital getting long treatments

Before MG, I had already faced numerous health challenges. From a rare form of arthritis to a heart condition, and more than 20 other medical issues — I’ve spent much of my life in hospital rooms and doctor’s offices. But nothing prepared me for MG.

When I was first diagnosed, it felt like everything had been turned upside down. My muscles — the ones I had always relied on — began to betray me. Holding my head up, walking, even smiling — things I never thought twice about — became impossible. But even then, I didn’t give up. I couldn’t.

At the age of 9, a doctor told me I had only two years left to live.

Two years.

That moment felt like the world had come crashing down on me. But I made a choice — not to give in to fear, but to fight. To live. I found a new doctor at the Children’s Hospital of Philadelphia (CHOP), and with them, I found something else too: hope. A renewed belief that my story wasn’t over yet. That maybe, just maybe, I could write a different ending.

Eight years later, I’m still here. Still fighting. Still living. And I’ve learned more about what it truly means to live than I ever imagined.

Writing my own story

And as I sit here today, reflecting on everything I’ve been through, there’s one thing I know for sure — I wouldn’t change a thing. Not the pain. Not the struggles. Not the tears. Because every step of this journey has shaped me into who I am today.

Courtney B. my scooter with her friend at MDA camp 2024 about to do the zip line

Courtney B. in her scooter with her friend at MDA camp 2024 about to do the zip line

Living with MG has taught me to trust. To trust in God, to trust in the strength He’s given me, and to trust that He’s not finished with me yet. Through all the struggles, I’ve held onto my faith. I’ve kept my heart open to life, even when it felt like everything was closing in around me. God has been my strength when I had none left. And by His grace, I’ve been able to accomplish things people once said I couldn’t.

This fall, I’ll be attending Xavier University, where I’ll be a Division I cheerleader — not just continuing my journey but rising higher than many ever expected. Because no diagnosis can define what I’m capable of.

When people meet me now — the cheerleader, the high school senior graduating early, the lifeguard, the law intern — they see strength, smiles, and joy. But what they don’t see is the quiet fight I live with every single day. They don’t see the long nights when I wondered if I’d be able to walk the next day or if I’d be able to lift my head without help.

Courtney B. at the Zip line

Courtney B. at the Zip line

If I could offer one piece of advice to someone starting their journey with MG, it would be this: You are not defined by your diagnosis. You will have hard days. You will doubt yourself. There will be moments when you feel like giving up. But know this — you are never alone. You are stronger than you think, and with God’s guidance, you will find a way to move forward, even on the toughest days.

MG is a part of my story, but it will never be the whole story. With God in my life and determination in my heart, I know the best chapters are still ahead of me.

Because I’m living proof that life doesn’t end with a diagnosis. In fact, it’s often just the beginning. And no matter what anyone says — you can do anything.


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