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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Comment by Deb Robins on March 13, 2013 at 12:38am
Mitchell's journey was an anomoly in more than one way and it is wonderful that he inspired PPMD to create his legacy. Cardiac care must be more aggressively treated with heart meds and respiratory care given much earlier also because of the additional benefit it has on the heart. When doctors say everything's fine as hearts thicken and function declines, it isn't fine at all, we have to start early to actively prevent decline. Prof Hoey always tested all three types of muscle in animals many years ago when others were only testing skeletal muscle because he used to say, "You can live without your legs but you can't live without your heart." This old soul Mitchell will prolong many lives. Thank you Pat & Mitchell and Mitchell's family.
Comment by Karin Kattich on March 12, 2013 at 9:01pm

Regarding heart transplants, it makes no sense to me that a kid with CF can get a lung transplant but one with DMD currently cannot get a heart transplant.  It strikes me as completely unfair to deny a child a heart, while it is almost standard procedure in CF to get new lungs that will end up destroyed by fibrosis.  Why not give our kids a little more time to wait for a treatment/cure?

Comment by Donna on March 12, 2013 at 5:30pm

I read, and listened, to many many of Mitchell's Journey and while so heart breaking, his dad made this absolutely soothing and beautiful.  I cried so much the last couple of weeks due to two boys that I do not know that have lost their battle because it made me "go there" and "there" is very scary.  Although I know it will happen one day, I just cannot imagine (as I'm sure the parents of these sweet boys as well) not having my sweet, sweet boy with me and not see his smile light up a room full of strangers, or a basketball court full of strangers, or a baseball field full of strangers, or his mom when I go to wake him up in the morning because he doesn't want to get up, just yet.  I know there will be better days ahead and I pray for continued reasearch and hope for all of our boys.  Thanks so much Pat for your blog - I always look forward to them. 

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