As I'm sure you've heard me say before (if you've been around here long enough), May is Williams syndrome awareness month. Part of that includes events that are dedicated to raising awareness of the syndrome and also to raising funds to help support the Williams Syndrome Association.
According to my friend Erin (whose daughter has Williams syndrome), this is the purpose for fundraising this year: "This year we are raising money for the continuation of neurocognitive research that is helping kids with Williams Syndrome EVERY DAY by producing the science tha
t helps educators test and teach our children better. This research has changed the trajectory of the lives of children who have WS. Additionally, the Williams Syndrome Association is also earmarking funds for a study of sudden death during surgery/anesthesia - a phenomenon that is long overdue to be studied. This phenomenon has been both random and completely unexplained until now. NIH funding for these studies as a rare disease has been halted. This year more than any other, fundraising for the association is a must."
Since we've become involved in the WS community, we've seen several (too many) children with WS pass away due to unexplained complications with anethesia during necessary surgeries (such as open heart surgeries to correct the heart defects common in people with WS). So this type of research has the potential to be life-saving and to even impact Kieran should he need the surgery some day.
If you'd like to make a donation in Kieran's name to the Williams Syndrome Association, please visit
this link.
The event that
we go to every year is about 2 hours away and is called Wheels for Williams. The host is a part of a car club, and they put on a drive-in for anything that has wheels.
There are several families in our general area that come each year and it's always nice to catch up with them. This year, I was
thrilled that my good friend Georgia and her family offered to come with us. It meant so much to me to have them there in support of Kieran and the others with Williams syndrome.
Kieran loved the little electric cars that were there, and Elizabeth (Georgia's daughter) was great at keeping an eye on him and making sure he didn't wander too far in them.
A band plays each year, and this year the band returned from a few years ago. They had actually requested to do today's event. During one of their breaks, the guitar player came over to where we were hanging out and began talking to me.
He said that his brother's eight-month-old grandson recently had open-heart surgery and had been diagnosed with Williams syndrome shortly after his birth. He said that after the family got the diagnosis, he told them, "Oh, I've met kids with Williams syndrome before. They're great -- he'll be ok." He was able to encourage them that the diagnosis wasn't the end of the world because he had been at the Wheels event before and had met our kids and knew how great they were.
 |
This was the car we picked to win the Williams Syndrome Families Trophy |
He also said when they were touring England, he met a man whose relative (I don't remember the relation) had Williams syndrome. It was neat to see that the "awareness" events were having an impact and enabling him to become an ambassador for Williams syndrome.
There are several families that come whose kids with WS are all about the same age -- Kylie, Jonah, and Braxton.
I think they were telling each other how glad they were to be friends.
The dad of the older guy with WS in the photo is the one who donated the
fire ring I bought last year (and currently have sitting outside our door with a flower pot inside it). He brought another one this year but since we'd ferried bikes in the back of our car, I didn't think we'd have room to bring another one home.
Cael had fun being chauffeured and also doing some of the driving himself.
A fire-shooter car was there again and gave us a good show, even in the rain.
Thanks to Kirby for hosting another great event and to Georgia, Chris, and Elizabeth for attending with us! We appreciate you!