Tuesday, July 16, 2013

Making Her World a Healthier Place

I've never blogged from my phone before now.  I could never get this Blogger app to load properly on my old phone, but I suspect I may now discover how brilliantly convenient it is, and find a whole new world has opened up to me!  I can now blog on my lazy backside as I lie in bed, or from the car on a long trip (with someone else driving, of course...), or maybe even from my hotel room at NDSC this weekend!
I really want to thank everyone who participated in the blog hop, either as participant bloggers, commenters or even as readers following along.  I loved the conversations and debates each post sparked, and am so grateful that this topic is being discussed right now.  The timing is important for several reasons.  Identifying what's important to us when it comes to the futures of our children with Down syndrome and those who will follow, especially those important medical issues that we'd love to see addressed sooner than later, is critical right now.  Research is beginning to happen, although not in the scale with which it needs to happen.  The samples just aren't available.  For researchers and scientists to be making the connections that they are is incredibly exciting!  But what next?  Do they have the necessary tools, the funding, the participation from our community and the biological sample base with which to pursue answers and, ultimately, important and life-altering treatments and therapies? 


And why is that?  Well, in my opinion, and in the opinion of others I know, it's because the Down syndrome community is vastly disorganized.  Don't get me wrong.  I'm not being critical here, I'm just stating fact.
There are too many hands in the pot, diluting efforts, duplicating efforts, stepping on each other in the unending quest for limited funding in a recession-torn world, too many broad and varied plots and plans and (very excellent and worthy) causes that need tending to, too many other things going on that supercede the critical need for research.   Funding is scattered to the winds amongst too many organizations all trying to do something different, when there are fundamental missing links that have to be created first (if you build it, they will come...). 

Centers for Down Syndrome Research Excellence.  A national patient registry.  A centralized Down syndrome biobank.

Down Syndrome Achieves is working to make vibrant Down syndrome research a reality.  Please read what they have to say at this link, and stay tuned in the upcoming weeks for the unveiling of a well-planned initiative that we can all get involved in to help strengthen research capabilities for Down syndrome researchers nationwide. 
When Samantha was born, research was probably the last thing on my mind.  Actually, for many years after she was born, research didn't really even enter my mind.  I was focused on growing an adorable baby into a beautiful, healthy little girl, focused on therapies, school, building social pathways...  I'm at a point now where things are clearer.  She's doing great, learning independence and what's right from wrong, gaining new knowledge every day.  Therapies have been mostly set aside for the time being, social activities are plentiful, doctor's appointments rare.  I feel that I have the tools to make her successful, have had my intro into the school system (and, while I know that's not always going to be so perfect, it is for now, and for that I am grateful), and can begin to focus my attentions and efforts on things that are more important for the long run, to keep her healthy, to help her continue to reach towards her full potential for many more years to come than would ordinarily be allowed, given the shortened longevity inherent in the pre-ordained path of the extra 21st chromosome. 

Looking at that beautiful, smiling, brilliant face in the photo above, thinking about the beautiful, smiling faces of your own children, shouldn't we do all that we can do to enrich their lives, make them healthier?  Live longer? 

I would do anything for my daughter, and suspect you would all do the same. 

Stay tuned.


Mardra said...

Excellent. Thanks for sharing this.

Kerri Ames said...

That is so great. I know when I was researching Down Syndrome for WDS Day I felt that there were way too many organizations that didn't seem to talk to one another.

Keep on advocating. I think you do a great job