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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 [...]
Continue Reading →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 [...]
Continue Reading →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, [...]
Continue Reading →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 [...]
Continue Reading →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 [...]
Continue Reading →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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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 [...]
Continue Reading →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!
Continue Reading →I love practical jokes. So does Kendall and she likes them even more when they are played on her.
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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 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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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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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!!
Continue Reading →It’s amazing how much our kids can do if we just test them. Every day I ask Kendall to do something new and she almost always knows what I’m talking about.
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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!
Continue Reading →Sorry it took so long, but we finally have a winner of the brand new Vitamix blender! However, you need to watch the video to get the results…
Continue Reading →Nothing really new, but a few neat pictures of Kendall. We went for a bike ride Downtown Chicago last weekend and I caught some pictures of Kendall and after looking at them, I realized that she’s starting to turn into a little girl. She’s no longer the baby or the toddler anymore. It’s both sad [...]
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I’ve been sitting tight on starting any additional Facebook Pages or Groups because there are already enough of them in publication. However, I recently reached out to Steph Mcvey, who started the Wolf-Hirschhorn Facebook group back a few years and has since amassed 470+ members. I found that her group follows the same ideals that [...]
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In our subdivision, we have this awesome pool and we’ve rigged up enough flotation devices that allow her to roam free around the pool. She can get her bicycle kicks going and has figured out how to maneuver herself in whatever direction she chooses. We’re hoping this gets her running pretty soon. We’ll see!
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About 3 years ago, Kendall’s speech therapist (Holly) told us that we needed to get this thing called a Vitamix. We already had a blender, but according to her, we needed a high powered, industrial version so that Kendall could eat all kinds of foods. Supposedly, this thing would puree whatever we wanted Kendall to [...]
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Just recently, this site surpassed the 1000 comment mark. This is a huge accomplishment for all of us and I am excited to say that we’re still growing strong. I want to thank all of you for taking the time and making the investment to share your stories and support the parents of Wolf-Hirschhorn children. [...]
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