Monday, May 4, 2009

Learning & Sharing

Since Playette has been diagnosed with good old-fashioned Trisomy 21, I've been not only obsessed with all things Ds, but also all things syndrome, period.

I've met all kinds of folks that have exposed me to diagnoses of which I might not have ever known otherwise.

Here are a few:

Costello syndrome

Cri-du-chat syndrome

Beckwith-Wiedemann syndrome

I love that such a vast Ds community exists. We really do live in a great time where this is concerned. People before us have paved the way so that we now have Buddy Walks and conventions.

The Ds world population is pretty large (approximately 1.5 million people, according to what I've read). If it weren't, I'd hope that another larger group would welcome us into their fold and help us navigate our way on the road less traveled.

Anyway, I was just thinking of these families today and hoped I could increase some awareness on their behalf.

You're welcome here.


Anonymous said...

Chrystal, you are a wonderful human being!. Your beautiful Playette is so fortunate to have such an amazing mother, you are both so lucky to have each other!. Thank you very much for doing this. May you and your family be always welcomed everywhere. Many blessings to you :)

ds.mama said...


Have you come across any blogs of families whose children have any of these syndromes? It would seem that our children would all have some commonalities, and certainly as parents we can relate to one another... Maybe we could add another category to the DSNM blogroll for this gang...

Cate said...

I swear, you really do start to think DS isn't the worst thing out there by a long shot.

invisiblecities said...

Thank you Chrystal. As a mum with a crazy rare kid it's very nice to know we still belong with such a lovely family of people. Should anyone care to learn even more... has wonderful information about our great kids. xx

Tricia said...

I've been thinking the same thing lately, in part because I have a new friend whose daughter has William's Syndrome. It is REALLY rare and there are not NEARLY as many resources and support groups available to her for WS specifically. I have been giving her all sorts of info from the DS groups.