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.
4 comments:
this is wonderful, hope he reaches his goal and helps get one step closer to a cure.
I too am familiar with the heat hibernation and trying to stay sane after days on end of not leaving the house. We don't have central air so I am stuck to the two rooms the wall ac will reach, meaning I can't even go in my bedroom. I am glad that Dakin is holding up well in this heat and that he tolerates the forced days inside.
I am in awe of kids like Gus who have such hearts for others and I am cheering him on. He has already done so much and I have no doubt he will make his target out of sheer will and determination. Oh how joyful it will be the day Dakin is no longer tethered by his vent and held in his wheelchair!!!
Devon,
Thank you for sharing about what Gus is doing. I just reposted this story on my blog where I try and encourage others to get involved in philanthropie. All the best to you and your boy.
Barett
hello devon,excuse de ne pas t'avoir donné de nouvelle. j'ai bien rencontré des chercheurs. J'ai surtout pris contact avec cecile martinat (experte en cellules souches qui vient de faire une publication importante sur la myopathie, et de plus membre du comité scientifique du téléthon comme Cox). Elle dit que les recherches italiennes sont très importantes et prometteuses et qu'elle va se renseigner sur celles de Cox au Jax.
j'en saurai plus en septembre
bon courage pour votre combat
gwen
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