By Heidi Webb-
I was eight years old when my “why” came crashing into me. It was the summer of 1980 and I was enjoying being a child with lots of friends and time outdoors. My father, whom I’d idolized even after my parent's divorce, went from a tall fearless figure to a man that would never walk upright again.
My father was an iconic 70s man, “born to be wild” as the song said. So when this giant in my life broke three cervical vertebrae in a swimming pool accident, everything I knew changed. Later that same year, my grandfather – Pop Pop - (another formerly strong, yet gentle and loving man in my life) succumbed to alcoholism at only 52 years old. His name was Jack Webb, like the iconic television actor of his time. These two back-to-back tragedies were the catalyst for my painful journey from caterpillar to butterfly.
These experiences and the hardships that followed; my father’s multiple suicide attempts and severe depression strengthened my resolve. I wanted to help others in ways that I helped my family and in ways that I never could before. Unsurprisingly, I landed in nonprofit where I have been for more than 24 years now.
Fate stepped in again when, in late 2022, I met the founders of Strongest Hearts, Tania and Ryan Barbera. At the time, there were no Strongest Hearts - it was but a mustard seed. During my first conversation with the Barberas, they shared with me that they had a problem that needed solving. They had access to a notable medical researcher who bears a solution to the problem, but they needed the wherewithal to launch a nonprofit and raise funds.
Six months earlier, the Barbera’s son was diagnosed with a rare form of Muscular Dystrophy and the solution was and still is within reach. They only need a few hundred thousand dollars. I knew during that first meeting that I wanted to help (and that with my experience, I could). Meeting them was like meeting a version of myself that wanted to make bold changes that could have life-changing results.
It was Jack, however, who sealed the deal. Jack and the future of his disease are my calling card. It is why I exist to help and why I continue to dedicate time to Strongest Hearts. Jack is a smart, funny boy. He is always keenly aware of his surroundings, pays attention to details and is a “light” in every room. Jack takes in small moments and has a keen awareness of the value of time (my gut tells me that he is intuitive and knows that he is innately supposed to appreciate every moment). Time, however, is not on Jack’s side. His disease, Becker’s Muscular Dystrophy, is within him. If given the opportunity to do so, this disease will take away his abilities and the playful boy I met will be sanctioned to a wheelchair until his final days (which will be sooner, than later).
Urgency is mandatory with Strongest Hearts because Jack is not alone. The estimated prevalence of Duchenne and Becker Muscular Dystrophy (DBMD) is about one in every 5,000 males aged five to nine years. Since engaging Strongest Hearts, we have raised half of the $300,000 they need to fund promising research – more promising than any lifetime before us. Imagine, treatment leading to a cure that would keep Jack and others like him alive and thriving…not ten years from now…practically now!
So, my “why” for what I do still dates back to that little girl who was about Jack’s age when her life took a turn. What is your “why” for helping Strongest Hearts? Is it for helping the Barberas see this broader vision for more than just their family? For finding a cure in our lifetime that will help children stay standing and living out their lives?
It is devastating witnessing someone you love go from being able-bodied and living life to having limited abilities to enjoy life fully. I can’t go back in time and prevent my father from being jokingly pushed into a swimming pool, or pulling the bottle away from my grandfather’s lips, but I can help the Barberas obtain the resources they need to keep Jack moving. They say that in life, once you know the solution to something you have to work to achieve that solution. Strongest Hearts has a solution.
Heidi Webb is the Founder of Green Kite Fundraising and My Friends Closest. She has spent her career either helping non-profits or building her own. She is a mother and a dog lover.