Friday, May 16, 2008

Here it is!

From the very beginning, we've wanted to do something in the meantime. The meantime being all the work that we're taking on to earn the research funds. We didn't want to have to wait until a certain dollar amount was reached to make a difference or to create fertile ground that could spawn a difference in the realm of pediatric brain cancers.

So what could we do? What would it take to start to turn the tide?

At the time Kyrie was diagnosed, both Jordan & Lacie were frustrated at how little anyone knew about PNETs. Nurses were printing out generic articles from the internet for them in PICU. And the doctors? Well, not much better there either. Seems none of the experts, the ones who parents in these situations tremendously rely on, knew much of anything.

Then our cousin Maureen told us about Ethan and his mom, Marcy. Such a blessing to have someone with some real information. Months later, Taya's family found us. And what was the take-away? Communication.

In honor of Ethan's family, Taya's family and Kyrie's family, The Kyrie Foundation has been inspired to create the Parents' Forum on The Kyrie Foundation Web site. We believe it's the families, the parents of the little ones who, by sharing their information, experiences, medical protocols and advice, will be catalysts in the quest for a cure.

This is huge. The parents' forum will serve as a community, a message board for any parent on earth to come share info, ask questions and find support from the only other people on this planet who know what they are going through. We hope that collectively the information shared will be beneficial not only to one another but to the medical researchers as well.

We hope there will be a day where no parent sits at his or her computer and finds us in a Google search. Until then, here we are.


motherof2 said...

What a fantastic addition to the Foundation!

Clarkers said...

This is such a great idea. I am so glad you are all allowing God to use you to help other families.. what a huge comfort it will be for them to have somewhere to go and talk with other parents and families that are going through or have gone through the same thing. I think sometimes it must be so hard for you all to hear about other children like Kyrie and so many people would close up and I am just so happy that you didn't... and that you started the foundation and that because of Kyrie so many good things are happening. Thanks for all you do!!!