You are an essential piece of the puzzle to defeat Duchenne.
Think back to the last time you sat proudly in front of a nearly-done puzzle. That sense of triumph drumming in your heart, as you put together the final leaf, patch of grass or corner of a flower. Your colourful pile disintegrates, and all you need is that final piece.
But when you reach for it, you realize that very last – and arguably the most important – piece is missing. Your heart sinks because you know, until you find it your puzzle will remain incomplete. Now, imagine if that missing puzzle piece meant young boys, around the world, could live longer, healthier lives.
Right now, this is the reality for those families who are desperately pursuing a cure for Duchenne muscular dystrophy. The missing piece is the funding they require to trial new solutions to put a stop to this life-limiting disease. Unfortunately, COVID-19 has made this already complicated puzzle even more so by putting a stop to particular trials and draining funding resources, as the focus of health care research is redirected towards our global pandemic.
COVID-19 has affected every aspect of our lives. It has also had a significant impact on charitable donations.
While this is an uncertain time for all of us, the fight to defeat Duchenne continues. Thank you to everyone who helped pick up the pieces and put the puzzle back together. Not only did your donation bridge the gap COVID-19 has created for funding, but it was matched dollar for dollar to help build hope.
For families, whose sons have been diagnosed with Duchenne, Jesse’s Journey and the work they continue to invest in is a beacon amidst what can otherwise be a very dark time. That’s why the Prendergast family are sharing their story – so they can help find the missing piece in the extraordinarily complex puzzle of Duchenne.
“April 29, 2020, was the most devastating day of my life. My wife, Rachael, lay on the floor, holding our son, crying,” Stephen Prendergast talks about the afternoon their family found out Cullen had Duchenne. “At first, I was ready to jump right in and move forward. Then, I Googled the disease and, just like Rachael, I completely broke down. I could not believe it.”
Stephen talks about his “ignorance” surrounding the disease, recalling when he turned on the news, more than 20 years ago, to see John Davidson walk across Canada to raise awareness for his son. At that time, Duchenne had not yet touched Stephen’s life, and he had no idea it was a death sentence.
Like thousands of other Canadians, he did not realize no boy had ever survived the disease, and it goes so much deeper than requiring leg braces or physiotherapy: “I wish I had supported that journey.”
Even though the Prendergast family can easily recall the pain of the initial diagnosis, they know they cannot stop fighting because, otherwise, they can’t be certain of what their son’s future will hold.
“I look at Cullen, who is just a beautiful little boy, and realize he has no idea about what is in store for him. Yet, as parents, you can’t stop your mind from jumping there: 10-15 years from now, we wonder if we will be able to provide for our son and support his needs.
It’s unbearable to imagine we won’t, but until then, we have to keep going – we have no other choice.”
On behalf of all the families who have to wonder about their sons’ futures, we thank you for making a donation to Jesse’s Journey.
Thanks to the incredible generosity of seven families, every dollar – up to $50,000 – was matched, meaning the positive impact of your gift has been doubled.
With that money, our organization will be more readily able to fund research that may result in our ability to put a stop to the devastation of Duchenne.
“COVID-19 has had an immense impact on all aspects of our lives. For families who are desperately searching for answers, surrounding this life-limiting disease, one of their greatest fears is a halt to research progress towards a cure. Right now, there are incredibly exciting things happening in Duchenne investigations, and the findings have pivotal implications for neuromuscular conditions more broadly. Unfortunately, when the pandemic began, the ability to pursue clinical inquiry became ever more complicated. Staff had to be laid off and all focus turned towards the pandemic. Now, more than ever, we need donor support to ensure our work continues. Families, coping with Duchenne, have suffered long enough – now is not the time to make them wait even longer for the day when a diagnosis is not a life sentence.”
Dr. Craig Campbell (Pediatric Neurologist, Children’s Hospital at London Health Sciences Centre)