clock menu more-arrow no yes

Filed under:

Honoring William Moore and the Cure SMA Fund Link

New, 5 comments

You can donate at the link below

On Saturday, Mark and Beth’s son William passed away. For anyone unfamiliar with the history of this website, Mark founded ODB and has built the site and our twitter page:

William had spinal muscular atrophy (SMA). Mark wrote a beautiful piece about William back in 2012:

What I see in William is not a child damned by fate, but one blessed to have the time that he has who deserves as much as we can give him. I see my son, the perfect little boy I always wanted, perhaps packaged differently than we expected but mine all the same. I see the incredible support and generosity my wife and I received and continue to receive, the love people have shown every step of the way, and the kindness of even total strangers touched by William’s story that has made this process so much easier than we had any right to expect. (The posters at Lone Star Ball deserve special praise for the support they’ve given us since the very beginning. They were the first people who really knew what was happening and gave of themselves repeatedly.) I also see the amazing doctors, nurses, and respiratory technicians who helped us get William home and keep him there. I see my wife, who spends every day at home with my son and daughter, playing with them, teaching them, managing every detail of William’s life from nutrition to therapy, and advocating for him tirelessly and without complaint. I will never be able to thank her for the love she has shown my son.

Mark shared his family’s journey, and their battle to find a cure for SMA:

If you’d like to donate, there is a page (click here or the tweet) to honor William and the Moore’s fight for a cure for SMA: