You have the
power to change
In the blink of an eye, your life can change…
…forever altering the course of what the future holds. You understand the deep bond between parents and their children and their dreams for a bright and fulfilling future. Unfortunately, a diagnosis of Duchenne muscular dystrophy can suddenly cast a dark cloud, robbing families of their vision of what lies ahead.
A diagnosis of Duchenne signals a complete change of life for the child and their family. Yet somewhere in this new reality, we learn to breathe again because there is hope – and that hope lies within you. Every dollar counts, big or small, and your donation saves the lives of boys and young men like Emery.
When Emery was four years old and suffered a burst appendix, it was discovered that his developmental delays weren’t due to gross motor issues. Instead, Emery’s creatine levels were through the roof, and genetic testing soon revealed his little body was fighting a raging battle against this rare and life-limiting form of muscular dystrophy…
Your donation will be matched dollar-for-dollar (up to $65,000) thanks to a loving group of donors like you, who will not rest until every child can live freely, fully, and uninhibited by this progressive, fatal muscle-wasting disease.
“Have you ever woken up in the morning and your life is one way, then, by the afternoon, it is entirely different? This is the experience of every Duchenne family. You think this life-altering thing will never happen to you, and then it does.
It took a long, long time before we could breathe. The first few years felt like science moved slower than Emery’s disease. You see, Duchenne is a disease of anticipation. We were told about the muscle deterioration that would happen to Emery’s body, and though the progress is different for each child, time is muscle for all our boys.
But as time passed, our hope increased. We felt that life for him would not be as short or limited as we were initially told. With ongoing research, scientists and medical professionals continue to uncover new insights. They are developing innovative therapies to transform the lives of children like my son, so our hope continues to float.
However, we know that transformative treatments only happen with incredible financial investment, and a new drug requires clinical trials to ensure the medication is safe and effective. Our boys and their families must decide if they want to face the risks, financial and time constraints, and uncertainty of being part of a clinical trial.
Emery and our family dug deep to determine what felt “right.” In my heart, I know participating in a clinical trial is incredibly selfless. Emery has done two clinical trials: one focused on muscle repair, regeneration, and reduction of inflammation and a bone health trial. He has also participated in countless studies.
By participating in these trials, his compression fractures have healed, his bone strength has improved, and he is thriving in many ways. We see and feel the impact of research firsthand – research supported by donors and supporters of Defeat Duchenne Canada.
Emery is now 16 and in grade 11. We start every day feeling gratitude for all the effort that is supporting him to do really, really well. Against the odds, he has a straight back, walks flatfooted, wears his AFOs (splints that support the structure of his legs and feet) every night, and takes his medicine – so much medicine!
Research holds the potential to bring about transformative changes, not only in developing new treatments for various diagnoses but also in advancing technology that can enhance the lives of individuals with mobility impairments, learning difficulties, breathing issues, and many other conditions. By investing in research, we can uncover innovative solutions that enable people to live fuller, purposeful lives, irrespective of their unique challenges.
As soon as we got this diagnosis, my today became and continues to be completely unpredictable. We pour everything into making today a good day and hope tomorrow will be the best it can be.
Research is our hope. And this is why YOU are so important. Without you, research is a thought rather than a reality.
Your motivation to give to Duchenne research can be my son or someone else’s. It may be the fear you may deal with something of this magnitude yourself or the hope to make life better for someone else and society. Whatever your motivation, I hope you feel the impact of your donation on Emery and my family. Your gifts helps Emery keep a bounce in his step (mentally and physically), helps him play, learn, grow, and live his best life.”
From the bottom of our hearts – thank you for giving today,
Kadey and Emery
If you believe our boys deserve a fighting chance, please join the fight.
From today until December 31, your donation will be matched up to $65,000, thanks to a group of donors who want the very best for boys like Emery. Pick up their challenge and carry it forward toward a brighter tomorrow for Canadians who need you today.