What would you do if you got the call?
My wife Heather and I can still remember the day in November 2002 when Heather’s sister Darlene called to tell us their son Eric had been diagnosed with Duchenne muscular dystrophy. Darlene and her husband Mike were obviously distraught. It was a day that would change our entire family’s lives.
Heather and I made a promise to Darlene and Mike that we would do everything we could possibly do to make their lives easier and to help Eric. In life when you are faced with a challenge, there are two options. The first is to back off and let it defeat you; the second is to rise up and tackle it head on. As far as our family was concerned we were going to beat this disease. In our minds there simply was no other option.
With Darlene and Mike’s permission and the help of our family and friends we created a fundraiser called “Eric’s Amazing Race” – a Car Rally and Silent Auction. We wanted to raise money to fund Duchenne research – and that’s when we discovered Jesse’s Journey. I remember sending an email late one night to John Davidson letting him know of our plans. When I woke up the next morning John had responded, thanking us for becoming part of the Jesse’s Journey family. Less than a week later we received a signed copy of his book and John also attended our event. He gave a heartfelt speech, with the message to “ask ourselves what really matters?”
From that day on our family has been committed to Jesse’s Journey. We realize that when it comes to Duchenne muscular dystrophy it is research that really matters. Since its inception in 2003, Eric’s Amazing Race has provided over $210,000 for Jesse’s Journey and DMD research. We have seen first-hand the benefits that research has had on Eric’s quality of life. The bottom line is, in order for research to work for kids living with Duchenne clinical trials are extremely important.
Jesse’s Journey has been funding research for over twenty years now, and the allocation of funds is well into the millions of dollars – and we know first-hand that researchers are making great progress.
Clinical trials are underway for several drugs in North American labs, and the Canadian Neuromuscular Disease Registry (CNDR) continues to collect data from doctors about Duchenne patients, which enables the sharing of research and also accelerates the development of new therapies and trials.
This is Eric’s firsthand account of what research has meant to him:
“Thanks to a drug trial I am in I feel a big difference with my muscle strength. The needles hurt but I know it is doing something good for me. I am constantly waiting for the final needle that has the cure in it.
I get a needle every week, and I have many other appointments which means I miss a lot of school. My teachers are very accommodating and they help me stay on top of all the work that needs to be done. But considering I was 2 years old when I was diagnosed, I find all of this very routine.
I am a very positive person, and I believe this is one of the reasons why I am doing so well fighting this disease. I am still walking and I will be turning 16 this year.”
This represents an example of how far we have come in the past fifteen years but we still need your support so we can find continued treatments and ultimately, a cure.
So what would you do if you got the call? How far would you go for someone you love? What really matters to you? Jesse’s Journey has inspired us to answer the call. We know that we would go to the end of the universe and back to help Eric and the one in approximately 4000 boys who live with Duchenne.
Through Jesse’s Journey our family has had the privilege of spending time with many boys who live with Duchenne. Sadly, we have lost too many of these boys, but that only strengthens our resolve. What matters to us is that the boys currently living with DMD have a positive future – and to know we have done everything we possibly can. The hope that your donation will provide, gives us every reason to believe that this dream of a cure is possible.
Heather Johnston and Ted Lindsay
(Eric’s Aunt and Uncle)