Saturday was not only fun but a personal reminder to remain open and amenable to different situations where my talents may be used for something greater. At the waterfall we met a large group/family wearing CureDuchenne t-shirts.
The group was on an annual hike to the waterfall. One of the boys has Duchenne muscular dystrophy and the family made it an event to have him experience the outdoors. The boy’s father mentioned some of the family took turns carrying him because he had a difficult time managing the trail or they would use a stroller wherever possible. They had a yellow lab which helped him with chores around the house like getting dressed but worried they would not be able to hike for much longer.
As we spoke I felt the need to help. I am a grad student and cannot contribute much financially but I told them I would love to help with the annual hike. This family was taking an active role in fighting back and at the same time spreading the word by walking the walk rather than just talking…how can I not cheer for that!?
CureDuchenne came onto my radar some time ago as I became increasingly frustrated with charities. As a runner I was always being asked to run “for a charity.” But when I would dig around looking for more information I discovered funds going to line pockets and fancy overhead rather than the purpose of the charity. I like CureDuchenne because they are clear with their purpose. They state what research projects they fund rather than the traditional “money goes to research” which is to vague for my tastes. There are a few Southern California charities that I am a huge fan of; the two that immediately come to mind are GiveBag.org and CureDuchenne.
I gave the family my email and offered to map out some routes in Griffith Park that are stroller friendly. Griffith Observatory would be fun and allow them to continue their tradition of hiking even as the Duchenne progresses. I also emailed the charity directly because I cannot find the slip of paper where I wrote down their names. They reminded me that no matter how difficult my life is there are others out there getting it done with a much heavier load.
Even though this particular disease has not touched my family directly it has touched my human experience. Staying open and amenable let me see my running habit as selfish and solitary as it may be can also be used to bridge that invisible gap that divides us.