OK, so I have been very, very remiss in posting on here. And it's not because nothing has been going on. The lack of posting's cause and effect is as follows: It became summer in East Texas, which led to 100-115 degree temperatures, which led to being trapped inside which led to slowly going insane which led to a serious case of cabin fever which led to a sudden and unexpected addiction to Pinterest which has stolen all of my evening blogging time. So blame the heat or blame Pinterest, just don't blame me. :)
Anyhoo, I did want to update you all on the Climb for Silas. Ten year old Gus has been hard at work this month, climbing mountains to raise money to cure SMARD. He has raised, so far, 1557.78 to go towards curing Dakin. Fifteen hundred dollars. Amazing. His goal is 50,000, and he is determined to raise it, ready to hike again next year to do it.
He has one more week to go this year. If you would like to donate, please do at http://www.facebook.com/l.php?u=http%3A%2F%2Fgenetichealth.jax.org%2Fclimb-for-silas.html&h=6AQAbUlG7 .
Here is a pic of Gus, his amazing mother Renee, Dr. Greg Cox and his family, and the photographer's sweet daughter. It is humbling beyond words to see the dedication of people-WHO WE HAVE NEVER MET!!!!-in curing this awful disease. It warms my heart and touches me very very deeply to know there are people who care so much about Dakin-about giving him a chance at a life unencumbered by a ventilator or wheelchair. I can't thank them enough and will never be able to. But if you want to help, please donate. It means more than I can say.