Madison is one of only 60 people worldwide diagnosed with a rare PPA2 cardiac mutation. This drawing – inspired by her heart journey – is currently a finalist for the Google Doodle 2023 Scholarship, which would provide both Madison and SADS with funds – and help raise awareness about rare genetic heart conditions like hers. Learn more about Madison’s journey below.

Can you tell me a little bit about your heart journey – from diagnosis to where you are today?

In April of 2022, I woke up in the middle of the night with crushing chest pain, numbness in my hands and feet, and trouble breathing. My parents tried to get me to sit up, but it only made the symptoms worse. An ambulance brought me to the nearest ER, where I crashed – my heart rate dropped into the low 20s, and they gave me epinephrine and atropine to stabilize me. The doctor who was on my case in the ER called his colleagues and said he couldn’t figure out what was wrong with me, so they took me to Johns Hopkins.

I spent a week in the ICU at Johns Hopkins, and they tested me for everything they could think of – viruses, immune issues – and finally they went down the genetic route. When I was five, my brother, Hunter, who was two at the time, had a random cardiac event after a stomach bug and passed away in the night. It was diagnosed as viral myocarditis at the time, so my family didn’t undergo genetic testing. But because of Hunter’s event, Johns Hopkins did cardiac genetic testing while I was in the ICU.

Madison and her brother Hunter

After genetic testing, I was diagnosed with PPA2 mutation (a cardiac-related mutation identified in individuals presenting with sudden cardiac death, occasionally triggered by alcohol intake or a viral infection). This mutation affects about 60 families worldwide, and I’m one of four people alive who have it. Hunter’s cardiac episode was the only reason that this gene was discovered in me.

After I left the ICU, I had to wear an external defibrillator – which was awful, almost worse that the ICU visit – for about a month. Then I had a pacemaker implanted. Now I’m on the road to recovery and am a normal kid again – just a kid who spends a lot of time at doctor’s appointments! I ride horses competitively in a sport called eventing, and will be attending the University of Delaware in the fall to study genetics. I’ve always wanted to study science and originally wanted to be a pediatric surgeon, but after getting this diagnosis, I want to go into biology and genetics so I can help make a difference for other families like mine.

Can you tell me a bit more about the Google Doodle competition, why you submitted, and why it’s important to you?

I’m artsy, so when this scholarship popped up, I thought it was a great opportunity for a great cause. It’s a scholarship where I can help other people, too – not just myself. The prompt this year is “What are you grateful for?”, and the first thing I thought was that I’m grateful to be alive. As broken as my heart is – emotionally, physically – it’s keeping me alive, it’s still beating, it’s beautiful because it’s given me every day that I keep getting to ride horses and be with my family. This drawing is all about how you can find beauty even when life seems fractured.

What advice would you give to someone who was newly diagnosed with a genetic heart condition?

You have to let yourself be vulnerable. Right after my cardiac event, I decided I wasn’t going to let it change anything about my life, and I tried to block it out. After discussion in therapy, I realized I couldn’t bottle it up. So I let myself be vulnerable, and doing that allowed me to appreciate everything I have – and will get to have in the future – so much more. Once I let myself be emotional, it made me look at the world differently. I appreciate my life even more now because I almost had it taken away. And I’m on a mission to raise awareness.