Thursday, February 18, 2016
The SMS community has come together, lead by the Smith-Magenis Syndrome Research Foundation to see if Ellen Degeneres might just lend her fame and goodwill to our cause.
It's difficult, with such a small pool of people to garner enough momentum to get the attention of a person in such demand. Just go to her Facebook page. You'll see. People are writing requests to her literally every minute. That's thousands. Millions of people. All looking for Ellen's attention. All hoping she - being the kind person that she is - will shine her light on their want/need, just for a second.
Our group just needs the world to know about us. We need more people to recognize Smith-Magenis Syndrome. We need this so that undiagnosed people can become diagnosed. We need this because SMS is original and hard to deal with and parents need HELP and UNDERSTANDING from others. We need this because so much of the medical community has never heard of it, so approaching it medically isn't necessarily done in the most effective way. We need this because there are ways to help our children with flipped melatonin production to sleep - but not if you don't know that your child has a flipped melatonin cycle. We need this because research can be done to help those with SMS and their families. We see outcomes for other genetic disorders being improved greatly with new genetic therapies. We need this for our kids too.
Thus the Research Foundation.
Thus the push to get Ellen's attention.
We've been lucky in that our paediatrician was familiar with SMS once Finn was diagnosed. So she's willing to try the off label, out-of-the box medications that work for Finn. We've been lucky because we've had amazing people working with Finleigh, who have taken the time to understand how to deal with Finleigh and help her be her best. We've been lucky because we're surrounded by family that help and live in a place that support many of the things we need. We've been lucky because Finleigh hasn't had many of the very difficult medical issues that others have. SMS'ers have died from Meningitis because their illness wasn't caught soon enough. SMS'ers have heart and kidney issues that threaten their lives. SMS'ers are in and out of the hospital because of issues that no one can seem to figure out. They go to the hospital, get stabilized and are then sent home.
Those things make Finleigh's over-the-top behaviours seem like nothing. They're not nothing... but they do put things in perspective.
So, the campaign is #BeingDory. The movie Finding Dory is coming out soon. And all of us... like Dory in Finding Nemo... just keep swimming. We keep swimming despite the smearing of bodily fluids all over our homes. We keep swimming despite the damage to our things after an especially bad meltdown. We keep swimming despite multiple hospital visits. We keep swimming despite schools and doctors that just don't get it.
We keep swimming. And we hope that Ellen sees that and helps us.
But even if she doesn't, we'll keep swimming. And we'll keep depending on each other. And we'll keep trying. Because what other choice to we have?
Brian and I were lucky enough to make it on CBC Edmonton Radio yesterday to talk about SMS. Our small contribution to the cause. Here's the link to it. The interview starts at the 11:10 mark.
Friends, just keep swimming.