8:00 AM Saturday, May, 08, 2021
Moose is the most special little boy, and we would all be lost without him.
About a year and a half ago I was struggling with watching my beautiful grandson, Moose, suffer with this terrible, incurable disease (cystinosis). It was so hard to know that there was NOTHING that could be done other than treat the symptoms and do our best to keep him going day to day. His mommy, Larissa, knows his schedule, his meds, his appointments, etc. like the back of her hand. She is amazing. These kiddos are warriors…but my goodness, their parents are just as incredible! So, as a grandparent, I was just feeling helpless.
Then I saw a post from Clinton Moore who was training for his 57 mile walk for cystinosis. It caught my attention. He was walking the entire 57 miles himself, in one day. Well…he’s crazy. But in such an inspiring and incredible way.
I followed Clinton on the day of his walk. I cheered him on from my seat and I cried when he finished. And I just knew – this is what we needed to do. And if we did it as a team, a relay, we could include EVERYONE. And so here we are, getting ready for the first annual Miles for Moose 57 Mile Relay!
I contacted the CRN to gain their support and Clinton Moore reached out to me personally. I was almost star struck. I am honored to have CRN, Clinton and the support of our community walk with us on May 9th and hopefully every year after that until a cure is found.
And I just know that every other cystinosis family feels exactly the same way. Every time we hear of another loss in the cystinosis community, our hearts just ache for those families. They ache for us too. We may not all know each other personally, but we are all connected.
Thompson Park Pavilion (Family Gathering Site)
1 Thompson Park
Watertown, NY 13601
Miles for Moose - 1st Annual 57 Mile Relay
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