When Chris and Patrick died, there was no Internet, no way to connect. The days just after they died, life was busy but at the same time heartbreaking – there was so little time to think about anything. After all was over, silence settled in. We were left with the burden of living without them, of going on and trying to make some sense of it.
No one called, not knowing what to say, not wanting to say something wrong. The few friends that did call were hesitant, expressed hope that 'time would heal all wounds,' not realizing that there are some wounds that time cannot heal, will not heal. People stopped taking about Chris and Patrick, afraid to bring IT up again, afraid to make us cry, not knowing what to do if we fell apart and sobbed.
Chris Jones, Mitchell’s father, shared his son's death with the world through Mitchell’s Journey on Facebook. Social networks enable sharing on whatever level individuals feel comfortable. This father speaks to his family through the camera. Where I savor the moment and rarely take photos, he sees life and every tender moment through the lens of his camera. I like to paint tender moments on the inside of my heart. He wants a visual and wants to share his photos with anyone willing to watch. As memories fade with time, Chris will have lasting reminders of pain, yes, but more importantly of touches, smiles, kindnesses, and love.
I have found we all have ways to lighten our burden, to make the pain manageable somehow. Maybe Chris’s approach has frightened some of the families. On the other side, it has generated awareness and a platform to change therapeutic nihilism, ensure early intervention and, with luck, encourage appropriate use of devices and explore heart transplants for Duchenne.
We will all talk about Mitchell Jones for a long time. Better than having his name on a building or in lights, this child's life will change the world of cardiac care for Duchenne. PPMD and Mitchell’s Journey have started collaborating immediately on an updated cardiac strategy to explore novel cardiac therapies and explore cardiac devices.
That's a pretty amazing legacy for a 10 year old and we should all be on our knees in thanks for this heroic effort. So much hope has been given to so many. And together we will end Duchenne.
Pat Furlong, Founding President, CEO
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