I’ve been trying to explain what this website is to my friends and family.  As I encourage them to come here and read our stories, I find myself attempting to describe why this website is different.

This website is HOPE.

I don’t really care about genetics.  My child is more than one number on one chromosome. There are environmental factors, other genes, new technologies, and a myriad of other influences that help to shape my child’s development every day.  Other groups, websites, and pages focus on the genetics of life.  This website does not.

When so much attention is put into those efforts… most of the information starts with, “your child will not.”  This website is built firmly on the principal of “Our Children Will.”

I’m thrilled to be a part of this “competition.”  Even if my child does not win – I’m overjoyed by how much traffic has come to this site.  We all know that search engines like Google and Yahoo use a website’s popularity as a factor in determining the rank of a website.

For too long – websites with outdated data and pessimistic attitudes were touted as the authority because they were ranked first.

As a group, we should continue to encourage people to use this website as a resource for learning about our rare syndrome.  Maybe then, a mother won’t be so devastated when she learns the news.  Maybe then, a doctor will offer a positive and realistic outlook for what life with our children is like.

Our Parent Run Website is HOPE.  And HOPE can go a long way.

 

7 Responses to Hope

  1. JessMarie9 says:

    This is so accurate and simply written. I totally agree. This site is amazing and I’m so happy that it’s becoming more popular and used as a resource for the doctors. Great post:)

  2. JillH says:

    Great post…I agree with your post. Without this site, there is little hope on other sites for our families and children.

  3. Laurie says:

    Well said.

  4. LeeAnn says:

    This is so true, the medical community is full of “defeatist” messages and I’m so glad to be a part of this blog where we reject those messages. Our geneticist is always saying about Brodie “this is not what we expected to see.”. And I always think, “ya good thing we didn’t listen to you and let the syndrome defeat our hopeful attitude about Brodie’s development.”

  5. tiffany says:

    I wish this was the first website I would have came across the first time I looked up Wolf-Hirschhorn Syndrome. Thanks to all the families who are a part of making this website so great!

  6. Carissa says:

    Love this. I can’t tell you how much hope this website has given me last several of months. Ava was born less than seven short weeks ago and already we are joyful over the progress she has made and will make in the future. I’m thankful to all who have shared their encouraging stories!

  7. letty says:

    I agree 100%. I wish I had found this website when Nathaniel was diagnosed. I stressed and cried about a million times….then I found this site and had a huge sense of hope. Thank you to all who have helped me in more ways than one. Keep posting comments and blogs. God Bless you all!

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