How far would you go for someone you love?
That’s a question our family never imagined we’d need to answer. But it turns out – with thousands of kilometres of travel; countless hours, “pokes” and treatments; moving homes; and every heart-wrenching step in between – we already have. We’re the Jancicka family, and we’re reaching out to you on behalf of Defeat Duchenne Canada – an organization that gives parents, like us, the hope they need to go a little further for the people they love most.
We know this letter is probably one amongst a pile of bills, flyers and other solicitations you really don’t have the time to read. But, if you can spare a few minutes, we’d like to tell you our story, which began on the day we realized that not every child gets to grow up big and strong, and the boogeyman isn’t something that hides in a closet – or under their beds.
On May 28, 2013, we learned the scariest thing a family can face is your paediatrician opening with, “I’m sorry,” and every moment after, when you feel like you’re utterly failing at the only job that really matters: to protect your child.
For our family, it wasn’t the things that go bump in the night from which we couldn’t protect our son, Noah. Instead, it was the diagnosis of Duchenne muscular dystrophy – a disorder that causes the muscles to break down and is eventually fatal.
When your four-year-old child is struggling to make it up the stairs and can’t run around the playground like his friends, you think, “If only we knew what was wrong, we could fix it.” But, when it comes to Duchenne, there is no band-aid that makes it all better.
So, what is a parent supposed to do? Sit idly by as we watch our younger son outgrow and outplay his big brother? Or keep Noah in bubble wrap because we know one fall could mean he will never walk again?
If you’re a parent, you’re shaking your head because you know neither of those things are possible when you’re raising a little boy whose only wish is to be able to ride a bike like everybody else. That’s why, when we were asked to participate in a clinical trial for a potential treatment, we had to say yes.
This wasn’t an easy decision to make, and the journey that followed was even more difficult. But, countless needles, tests, scans and medical trips are a part of the distance that Duchenne demands of the families it affects.
While the trials we’ve participated in didn’t create a cure, they’ve given us something nearly as valuable – the thing this entire letter is about: hope. By donating to Defeat Duchenne Canada, you will be helping to fund life-saving and enriching research that can create a future where the diagnosis of Duchenne isn’t so scary, and little boys, like Noah, won’t ever again have to wave from the window as they watch their little brother ride away on a bike.
We know it’s hard to understand that something so intangible can make such a difference for families like ours. But, when you live in a constant state of uncertainty about when your son will require a wheelchair or if he will make it to university, the thought that there might be something on the horizon is more powerful than you can even imagine. That hope, which saves you when your son cries because his legs don’t work like everyone else’s, is why we’re telling you our story and asking for your help.
Now that you’ve gotten to know our family, we hope you’ll consider making a donation to Defeat Duchenne Canada to help others. With each dollar you give, you’re going to help bring that horizon of hope a little bit closer, so in the future, when parents are asked how far they will go for their children, the answer won’t have to be so long.
Leah Jancicka (Noah’s Mom)