Posts by author: KevinO

Recently, we were contacted by a wonderful family from the Netherlands that informed us that their brother (in law) has Wolf-Hirschhorn Syndrome. Today, Jaap is alive and is 58 years old, and could very well be the oldest Wolf-Hirschhorn male alive that we know of. They were kind enough to tell us of his wonderful […]

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These six words are often stated in this household. Unfortunately, it’s just the way things are. I don’t like telling my children that it’s not fair, but they will have to deal with it – especially when it comes to parenting and trying to be consistent with each and every child. However, it happens to […]

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Another successful year! Thanks to all the parents, family members and kids of this year’s event. 56 entries and tons of awareness to our community and children. Thanks to everyone for a great 2013 Halloween! Watch the video to see the results!

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2013 Punkin Patch

November 11, 2013 by

And so it begins! Our 3rd annual Halloween Costume event is officially launched! From day 1, this event has been about sharing our kids to the world in a time of joy for our families and for the kids. Let’s give a hand to all 52 Punkins entered in the 2013 event! As you may […]

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Our Annual Halloween Costume Contest was established in 2011 to promote awareness and provide support to children and families diagnosed with Wolf-Hirschhorn Syndrome.  Each year, we celebrate their addition to our lives by sharing their happiness and Halloween costumes to a greater audience. This year, the 2013 Halloween Costume Contest will be named the “WHS […]

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Last week I had a moment that caught me by surprise; one of those times where your mind goes completely blank, the scenery around you freezes and a single point of focus consumes your every thought. Every Wednesday I try to take the kids over to my Mom’s house for dinner to hang out with […]

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About this time last year, I made quite an extensive list of the developmental milestones that Kendall had reached at the ripe age of 5. As we well know, all of our children are quite different and each one has their own way of being who they are. After reviewing this list again 12 months […]

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Some time ago, I wrote an article about our children and what siblings mean to them across all phases of their growth and development. There is no question that today, Kendall has developed more quickly due to the presence and interaction that her siblings provide her on a daily basis. Some of the activity she’s […]

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And then there were 4!

April 10, 2013 by

Back a few months, I signed up some additional help with the wolfhirschhorn.org-1-man-show by adding Ross Lennox. To this day, his existence continues to be irreplaceable to all of us in ways that nobody will ever notice. I can’t thank him enough for all that he has done to keep the site live, up to […]

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And then there were 2

December 4, 2012 by

Hey everyone! I have been meaning to talk about the progression of this web site and the WHS.org community over the past 3 months but haven’t found the time to spread the news. I am excited to announce that Ross Lennox, father of Mia is “officially” an integral part of wolfhirschhorn.org. Over the past year, […]

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For those of you that remember the fun we had last year, this year should be even more fun… Last year, we gave away 4 ipads to our kids. This year, we’re going to shoot for another 4 (maybe 5). Here is how it works: Be certain that you have a child with wolf-hirschhorn syndrome […]

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As part of the history in tracking Wolf-Hirschhorn Syndrome kids and their accomplishments, I wanted to make it a point to document some things about Kendall for us to look back on at some point, but also to give other parents an idea of what kids are doing at certain ages. We realize that all […]

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It’s been a while since I’ve written and I’ve got a few things that have been on my mind. The first one pertains to what I refer to as the “widening of the gap” and the second has to do with Kendall turning 5 (7/18/12). I’ll address Kendall and her accomplishments to date in my […]

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In early April, the Schulte’s and O’Brien’s arranged a meet up to visit and get to know each other; but more importantly, get to meet Kendall and Elsa. We decided to collectively write a post about our feelings of the past and future. Here is our story… Looking forward Meeting Kendall, for us, was like […]

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I was sifting through video and image files and randomly clicked on a date that had a few videos that I completely forgot about. On 8/17/07 (my birthday), I video taped Kendall for no particular reason. They are very short videos, but thought that it would be good for other new mothers to see her […]

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FOR IMMEDIATE RELEASE Tuesday, February 15, 2012 Joint Statement of the Rivera Family and The Children’s Hospital of Philadelphia In response to significant public interest surrounding the Amelia Rivera story, the Rivera Family and The Children’s Hospital of Philadelphia have issued the following joint statement. Philadelphia, PA – February 15, 2012 – Over the course […]

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One of the most beneficial things we can do as a group is help each other on tips and tricks around being a parent of a wolf-hirschhorn child. For us, one of the scariest things that we faced with Kendall is wondering how to effectively care for her feeding tube and Mic-key button. So, we […]

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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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This site focuses on the children with Wolf-Hirschhorn Syndrome. What we sometimes forget about are the parents and moms that carry the load for our kids. The “Parent Profile” is a series that praises the very people that give up all they have for their child with Wolf-Hirschhorn Syndrome. This story profiles Kimberly Schultz, mother […]

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I’ve pondered this particular topic for quite some time and I always wondered how politically correct I would be in broaching on such an article. However, it came to light today so I decided to talk about it. We have 3 little ones in the house under 6 years old, with Kendall being the middle […]

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As our (annual) 2011 Halloween contest winds down, we close it with a few photos of the winning kids and their new iPads. Congrats to everyone! I had to add one extra of me, Kendall and Frank. I don’t have many pictures of me and 2 kids with whs!

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Practical Jokes are Funny

November 18, 2011 by

I love practical jokes. So does Kendall and she likes them even more when they are played on her.

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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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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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Dr. Talon Seuss

November 1, 2011 by

Hello, this is Talon. He is 4 years old and has Wolf Hirschhorn Syndrome. He is my little Miracle and truly my hero. He has touched so may lifes with his beautiful smile and love that radiates from him always. Talon has already surpassed at 4 yrs old, what the doctors told us he would […]

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Justin’s Going to Jail

November 1, 2011 by

Justin is 24 years old and it took him 20 years to say mama. He is a very loving young man. He loves women, music and sports. The Dr.’s are amazed to this day how well he is doing. He played with an ipad at the hospital last week and we saw a differnt side […]

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We decided that our three little ones suck the lives out of us, so what better for them to be than Vampires for Halloween? Kendall is all decked out in her blood draining outfit.  

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Dakota Rose at Halloween!

October 29, 2011 by

Here’s a photo of Dakota Rose Cortright (8-3-02, 4p-) We live in California and have relatives in Wisconsin that purchased this sweet costume for our sweet little girl.  

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Grace’s First Halloween!

October 29, 2011 by

Here is our wonderful daughter grace in her Halloween pumkin dress…. We had great fun in ripping up all the crepe paper.. Grace thought it was hilarious!!! We even had loads of smiles! Great fun!!! Happy Halloween guys!! Can’t wait to see all the kids in thier costumes!!

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