This is Dakin. Behind these amazingly beautiful brown eyes and chunky cheeks lies an insidious disease. One that we never in a million years saw coming. One that lay dormant in our DNA and that through chance combinations of genes rendered this sweet boy unable to sit up, to walk, to even merely breathe. This is SMARD.
On the Daily Dakin, I try to focus on the positive--after all, if you spend all your time pining after the gold you 'should have' gotten, you tend to miss the silver lining. And I have much--so so much--to be thankful for.
But today I want to, just for a moment, concentrate on the reality of SMARD. To say it is hard to live with would be a gross understatement. Dakin has to have breathing treatments with a vest and medicine he hates. He has to be suctioned. He can't be off his ventilator for longer than 30 seconds. He gets water down his trach from his circuit that makes him choke and sputter. He can't get toys he wants or go pull the videos off the shelf. He can't throw dirt or unroll the toilet paper or color on the walls. He won't ever be able to sneak out or go down a water slide or do many of the millions of little things--things we take for granted--that make up a life.
Now that being said, Dakin has a wonderful life. He smiles. He laughs. He is happy. (Which is, after all, all that anyone can hope for in this life.) As much as is possible, he defies SMARD. He has it, but it most certainly does not have him.
But maybe, just maybe, we might be able to give him the chance to do some of those things he can't. Research is going forward. Advances are being made. And you can help. Here's how:
Go to www.voteforSMA.com and vote for the Gwendolyn Strong Foundation every day until the 29th. It's simple and takes just a moment, and they could win 20,000 for SMA research.
Join in our blog party. Post about the contest and your experience with SMA or SMARD. Even if you have none, you can post about Dakin if you like. He is pretty cute. :)
Thanks for letting me be serious for a moment. Levity scheduled to return soon. :)