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.
Greek Life...More than the party
In my opinion, philanthropy is an overlooked aspect of life. Greek life is no different. The common perception, to the outside world, is that it’s all about the parties. That's not what it is to me. When I learned about Strongest Hearts, the idea of a fundraiser through my fraternity was conceived. Originally I just wanted to raise a little money but when it came time to plan the event, I realized that research towards a cure for muscular dystrophy was something that could hold value among a large community at the school. We decided to go bigger and get the entire fraternal community involved to really spread Strongest Hearts’ message throughout campus. At first, I wasn’t too sure how the event would go because it has been difficult to raise funds among the fraternal community for non-school-sponsored events.
However, I have been proven very wrong.
Throughout this process, I have been blown away by the immense support Strongest Hearts has received from this community. Yes, the intention of raising money for a great cause has been a success, but seeing the community come together to achieve one goal has been what stood out to me the most. This unity solidified in my mind that this is a cause people really care about, and I am grateful for the opportunity to be a part of such an impactful event.
USC, thank you so much for your support throughout this event. Your generosity and support have blown me away and for that, I appreciate each and every one of you who have contributed. With only a few days left in the contest, I want to wish everyone good luck and I hope we can finish strong.
UofSC student and organizer of the Garnet Fundraiser
I am not a blogger. I have tried on many occasions but in my life, nothing has held my interest in a way where I would like to write about it so frequently that I could create a blog. I love to write, and I have many, many interests. My wife would say I have too many. Coaching, my company, playing guitar, botany, mindfulness, just to give the small list. I am what you might call a buffet intellectual. For those of you who think that is obnoxious, I stole the line from the Simpsons so settle down. While I enjoy and love these activities, the idea of writing about them with regularity is inconceivable to me. That is what makes this blog so ironic. It is a subject I am loathe to write about. It is also the most important thing I will ever do in my life and is worthy of every word that I write forever more. You see my son is sick. Just writing it makes my anxiety peak in a way that I have never felt in my life. He has muscular dystrophy. It is a terrible disease that could rob him of nearly everything including his life. The worst part is that while he had mild symptoms (which we are thankful for) had it not been for a series of strange circumstances, I would have blissfully continued to live my life unaware of the illness that is progressively hurting my son.
Therefore, I write now.
This disease needs to be discussed, understood, and beaten. My journey was nearly six years long and could have been 3 weeks long. As I tell the story of my family and our journey, it is one of amazing people and tragic decisions. Of hopelessness and a belief that we can make a difference.
The story of our son’s muscular dystrophy begins when he was three. There were no signs that anything was wrong. He was developing fine physically and mentally he was clearly ahead of many other children. We were thrilled. The only small thing we saw was he had weirdly learned to walk on his toes instead of flat footed. During one of his regular check-ups, the doctor said we didn’t need to worry about a thing and that with most children the issue resolved itself by no later than age 5.
That was that. He was what they called an idiopathic toe walker and there was nothing more to it. It would resolve itself and we would move on and never think about it again. Spoiler alert- that is not what happened, but in the short run they were right. Jack continued to toe walk, but his life was not impacted, and things continued to be ok. He struggled with running, but we were told that was normal for toe walkers as they had shortened Achilles because of the toe walking and once, he outgrew it he would catch up to the other kids. We accepted that we weren’t raising the next Usain Bolt and life went on.
Then his 5th birthday came and went, and the condition was not improving. In fact, it was getting slightly worse. We went back to the pediatrician and this time they recommended some PT to help Jack learn to walk properly. Again, no cause for concern. We began his physical therapy at John Hopkins and there was a little bit of improvement and life went on.
Then PT began to drag. There was minimal improvement at the beginning. It was short lived, and the results were fleeting. We tried some night splints, but they were uncomfortable and poorly made and did little to help him other than making sleeping hard.
We were beginning to worry, and the little voice parents get in the back of their head was speaking just a little bit louder. None of the things we had been told were coming to fruition and in fact things seemed to be getting worse. He couldn’t get his foot all the way down now and we were seeing his shoes wear out quickly. It was at this point that we moved Jack to a new pediatric rehab facility called New Beginnings.
This is where things would change forever… just not right away.
Ryan Barbera is the co-founder of Strongest Hearts, husband of Tania, father of Sofia and Jack, Feeder of all fish and dogs in the house
No News is Good News
Yesterday was one of our 2 checkups with our doctors for our son. The big news was…. No news.
So why am I writing about it? It is the only news that a parent of or a person with BMD or DMD wants to hear. Nothing has changed. You look fine. I cried by myself in my car for twenty minutes. For those who don’t know me. I am not a notorious crier. Quite the opposite, in fact I was once accused of having my tear ducts removed.
This news was all I could’ve hoped for.
I started thinking about the appointment almost daily two weeks before it happened. I thought about how I would handle bad news, how I would handle good news. What I would say to Jack, the conversation I would have with my wife after the news, every single possible outcome. When it was nothing new... I cried.
This is our life, and it is why I fight with my family, friends and all of you. Every day you look for a change, or something that indicates the disease has progressed. Every day you pray today is not the day that something bad happens.
Unless we find a cure, we will never spike the ball in the endzone, we will never go to an appointment with my son where I don’t fear what will be said.
I have had several very close family members who have fought and survived cancer, and they all talk about the same thing. The once or twice a year appointment where they get the news: Their scan is clean. Everything is….fine. No new news.
I didn’t realize I didn’t understand this, until now. It is the mundane knowledge of he is ok, that had now brought me more joy than any other news I can hear, except one day the words… we found a cure.
When that happens… I will cry one more time and then hopefully never again.