While I was away the awesome new network was launched. PKSKids is now the place to learn about children like Ben and Simon. We are so proud to have Ben's blog featured there along side Simon's website.
This is so very important to all PKS families for a variety of reasons. Foremost is the ability for us to raise awareness about the syndrome which many who have loved ones with the genetic disorder agree that PKS is not as rare as the medical community has previously thought It is a difficult to diagnose the genetic mutation in infants. Therefore therapies sometimes begin too late for a PKS child to thrive like Ben and Simon. If those therapies are in place at a young age chances are that those children can and will become the beautiful and thriving kids that are pictured on the website.
More importantly is the potential for federal funding to research further a future prevention or early detection of Tetrasomy 12p so that parents are aware of those that support their kids and will provide help once their child is born! It is imperative that support is in place at birth. Ben would not be with us had we not had aggressive medical support at Ben's birth.
It is our belief that these kids can become wonderful contributors to our world. Ben's ability to paint is just one small example. Imagine the loss of other little ones who have talents and abilities like Ben.
I thank Gretchen Peters and several other PKS parents for forming this network. This is something Joan and I could never have dreamed of in those horrifying early days that Ben struggled through. Our PKS family is growing daily and we have these folks to thank for their hard work and efforts.