Kevin. Thank you for this site. I want to take a minute to express my gratitude to you for this site. I’m also going to lay it all out on the line.
1. When we found out about Alexander’s syndrome – we did our research. Just as everyone else, we scoured the internet. All we read were horror stories. We heard the worst. Our hearts broke. The internet – the path to unending knowledge – failed us.
2. When we were put in contact with the National Support Group, we were thankful. We were grateful to find people who understood what we were going through. We were grateful to find people who could support us. We were grateful to find people who gave us hope.
3. Often there comes a time when the vision of a group and the vision of a person separate ways. This spring, I was at a crossroads. Although I loved the people I had connected with, I felt less and less connected with the support group. Their vision was not my vision. It began with baby steps… joining up with people on facebook…. all the while, taking steps back from those visions I did not agree with.
4. Then you started this site. Hard work. You put in hard work to connect people. There is no “moderator” who must approve what we say. There are no “donate” buttons. You are not solicitating to go anywhere. You are just connecting people.
Thank you for your hard work. I hope I don’t offend too many people with this post. I’m just so proud to be a part of something where people are the focus. I don’t have the time or energy to conduct the surveys or create the maps. Thank you for doing those things for us.
You rock. Kristen
If you enjoyed this article, please consider sharing it!
Well said, my friend:)
Kristen, this is very kind. Not only is it fun to bring everyone together, it’s gratifying that people are finding what I would have wanted to find when Kendall was diagnosed. We too walked through your steps 1-3 and felt the same way. The dead end search and lack of “support” led me to start the site. It’s become way more than I ever expected. With every new parent, with every new child, and with every new pain, we have built a real community. All I can take credit for was getting it started. There is no way that any of this would have been possible without all of the great people that have participated.
By the way, we’ve only just begun. There are so many more ideas to be implemented (but I have to keep them to myself for fear of them being stolen…). 😉
I agree, Kevin Rocks!
Kevin, I have told you many times how much I love this site and how important I think that it is to those of us who are raising children with this very rare and unique syndrome. While I do understand the intentions and purpose of the National Support Group, and, obviously, I support their efforts in getting the word out about Wolf Hirschhorn Syndrome to the medical community and researching the genetic components behind it, I feel that your site serves an entirely different purpose~ and it is a very important one! As Kristen said, it helps to connect people through personal stories~ a community blog, of sorts. I, also, have personally benefited by meeting a few moms I wouldn’t have known otherwise as a result of your hard work and efforts. Thank you for bringing us all together to share our triumphs, our tragedies, our laughter and our tears!
I also want to say thank-you, and that I am truly happy to be part of such a wonderful group. I learn so much from all of the stories the I look so forward to reading.
Kevin,
I think you know how our family feels. We are so blessed by your efforts and your selflessness and thankful for your creativity and hard work.
We have taken great care in determining when, where and how we want to discuss WHS as it relates to Norrah and our family. THIS is that place where we can celebrate her accomplishments and ask the tough questions and be a family with no other motives than to see each of our children thrive and benefit from this community of caring parents, friends and relatives.
THANK YOU, THANK YOU. Echo everything Kristen wrote.
Keep it up and let us know how we can help.
Yes thanks Kevin! Because of your creativity and hard work we have a completely different experience of life with a WHS son than was available before this site and I am thankful, my family is thankful, and my extended family is thankful. The community and sharing on this site and feeling of hope and POSSIBILITIES and support are AWESOME! The locator map is great! and I can’t wait to see what the future of the blog brings.