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A Life Changing Event…for a greater population

January 30, 2012 by KevinO

As a group, we need to stand up and applaud each other, thank our families, and be proud of our accomplishments. A bubble was building and it finally popped. We all know the story now and if you don’t, just check out this link: Brick Walls. On Friday, January 13, 2012, a historical event occurred […]

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Brick Walls

January 12, 2012 by crivera75

I put my hand up. “Stop talking for a minute. Did you just say that Amelia shouldn’t have the transplant done because she is mentally retarded. I am confused. Did you really just say that?”

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Winners Announced: 2011 Halloween Costume Contest (Archive)

November 13, 2011 by KevinO

Sorry for the delay. Watch the video to get the results!   Here are a few additional details of the contest. Everyone did a great job of creating Wolf-Hirschhorn awareness and an interest in our children. Thank you! 42,000 site page views 14,000 new visitors 7,704 total votes 4 total iPads to give away and […]

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Hope

November 11, 2011 by Anonymous Parent

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.

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A Historic Day for our Kids and for Wolf-Hirschhorn

November 7, 2011 by KevinO

I am proud to say that our voice as a community was heard today and everyone did a phenomenal job of showing the world what our kids are all about. Upon embarking on this contest, I set some goals for the site, it’s visitor traffic and votes that our kids will receive over the course of this […]

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Are you Ready to Win an iPad?

October 3, 2011 by KevinO

For those of you that remember the Easter picture contest, you are one step ahead. That contest alone drove a ton of awareness to our cause and to this site. We had over 1000 total votes and twice that many visitors looking at our kids in their Eater outfits. A fun contest indeed. Well, that one is no comparison to what is going to take place for Halloween. One of our tremendous fans has stepped up and donated a BRAND NEW iPad2 as a prize to be won for the highest vote getter of the 2011 Halloween picture contest!

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Letter to a New Mother

June 28, 2011 by Kristen

Please remember that life can change in an instant. There are people already in your life that you love unconditionally, and you would go to the ends of the Earth for them…. don’t worry – you will feel that way about this baby also.

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Region 1 Gathering – Summer 2011

June 27, 2011 by Kristen

There is a bond that is shared between families with children with rare syndromes.  It is this indescribable thing.  The bond is especially strong between the mothers, but really it is a family thing.  They are the people who pull you through the darkest hours.  They are the people who have been there / done […]

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A Story about Jon Kenneth York, Born 1964

June 20, 2011 by KevinO

Recently, Sharon York, mother to Jon, reached out to me and asked if we were interested in a story about her son. Jon was born in 1964 and is likely the oldest living male with Wolf-Hirschhorn Syndrome. Jon turned 47 this month and Sharon detailed her story in this article. Although most of our stories are about the younger children more recently diagnosed, this site is meant to tell it all; especially ones like this.

This is a very special story and I am delighted that Sharon has opened her life to all of us.

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And the winner is…Tanner!

May 16, 2011 by KevinO

Wow, what great participation! I am happy to say that the outcome of our first contest and giveaway was wildly successful. I want to applaud everyone for putting effort into this contest, especially the Aman’s for driving 240+ votes throughout their network. Jessica has told me that they plan on giving the money to another […]

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Left with a Memory…

March 16, 2011 by bekah_10

I want to introduce you to my little miracle. His name is Blake Isaac Henderson he was born May 6, 2009 and weighed 3lbs 2oz and was 16 in long.

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Too beautiful to stay

March 5, 2011 by Legato

Our son was born a year ago, early diagonsed with WHS. During this year we have seen him grown and learn new things.

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Top 10 Benefits of having a Wolf-Hirschhorn Child

January 3, 2011 by KevinO

I’ve been thinking hard about how each of us go through the stages of acceptance and have realized that Cathy and I have gotten to the level of where we really don’t think too much anymore about the situation we’ve been put in, and are in the frame of mind where we tend to take […]

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I Believe…

September 17, 2010 by crivera75

While I was reading some of the blogs on here about new WHS parents, I was at a loss at what to write to them about getting the diagnosis. Those days seem like decades ago even though it has only been two years. I decided to look through my old journals and found one of […]

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