Walk with Jesse’s Journey to provide a beacon of light within what can otherwise be a very dark place.
The Walk to Defeat Duchenne will return on Sunday, May 24, 2020 (rescheduled due to COVID-19 to Monday, September 7, 2020 – World Duchenne Awareness Day). Leading up to this very special date, families – like the Kings – are asking you to come together to show children diagnosed with Duchenne muscular dystrophy they have an army of support behind them.
“I don’t think anything can prepare you for hearing that your beautiful, innocent little child, through absolutely no fault of his own, has probably the worst disease imaginable – a fatal and slowly progressing disintegration with no cure.”
Dylan’s mom, Sandra King, reflects upon when she heard the “dreaded words” of her son’s diagnosis just shortly after his fourth birthday. Upon receiving the news that Dylan has Duchenne, all the Kings could think about was how drastically the vision of their family’s future had changed, knowing they would have to bear witness to their son’s steady physical decline and loss of independence.
It was too much to bear. But, parents never give up the fight for their children to have the best life imaginable.
“I made a promise to Dylan, and myself, that as long as I possibly could, I would take care of him. As long as I can, I will be on the front line for him – at home, at school, with his friends and throughout any other circumstance where his safety or well-being is a concern. I am his strongest advocate and will stop at nothing to ensure his days are as stress-free and simple as possible.”
The Kings are already making the major sacrifices demanded of families coping with Duchenne: Sandra quit her job to be his full-time caregiver: the family sold their home to find one better suited to Dylan’s mobility needs, and soon they will completely renovate this newer space to reflect his growing dependency on a wheelchair.
When there are families all across Canada, making these significant, life-altering changes to support their boys, we hope you understand why we can’t be shy about asking you to participate, donate, and support the Walk to Defeat Duchenne.
“Through their endless commitment to raising funds to find a cure for Duchenne, Jesse’s Journey is the beacon of light in what otherwise would be a very dark place. This organization, and the people we’ve met through it, have been our most constant reminder we are not alone.”
Join Jesse’s Journey ambassadors, including the King family, as we raise funds and awareness to defeat Duchenne. Together, we better our chances that this may be the last generation of children who have to cope with the cruel and undiscriminating effects of Duchenne muscular dystrophy.
Register your team online or donate now to fund the most promising research and support families across Canada living with Duchenne.
On behalf of all families facing the insurmountable obstacles of Duchenne, we thank you for your commitment to finding treatment options – and a cure – for this dreadful disease.