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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every morning that there is a trip to the doctors office i always prepare myself for bad news and im pretty sure that is what the daily life is for families that have children with whs. i spent weeks preparing for this month. why? because it was revisit to every specialist. so far we visited […]

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Mia on the Pia(no)

January 8, 2014 by

Happy New Year everyone! Compared with the last couple of years, I’m glad to report that Mia has had a great winter thus far and Dec 31st marked the end of a full year without any major seizures or unplanned hospital admissions. Mia’s eating has also picked up since my last post, so the g-tube […]

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Crazy Good.

January 7, 2014 by

I’ve mentioned before about Sophia’s persistent personality .  When she wants something… stay out of her way, she is going to get it. She can say, “NOW, Mom” and she means it! This is can be an act of defiance or an attribute.  Mostly, with WHS children, I’ve found it’s an attribute.   When Sophia says […]

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We have a Sitter!!!

January 4, 2014 by

5 days before Caroline turns 8 months old, she is now sitting! Granted, it’s not to the point yet where I can just sit her down and leave her there to play, she still is working on keeping her balance for long periods of time, but she is doing “propped” sitting very well (where she […]

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Adventures in Communication

December 14, 2013 by

Hello, friends, In April, I stumbled upon this excellent article, An Open Letter to the Parent of a Child with Speech Delays. The piece was so thorough and helpful and seemed to be written precisely for Fiona’s situation (and seemed to address, with lots of compassion, all of my own feelings and initial responses to […]

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I don’t even know how to start this off. usually when i’m outside with talon i usually get the oh my your baby is beautiful or how old is he and the usual congrats. but yesterday it made me realize that they’re are some snotty people out there. yesterday was a back to back appointment […]

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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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I’m a little late with Caroline’s 6 month update, and I’m sure I will not get another done for a while due to the holidays and then both kids birthday’s coming up.  Things have still been going great! Caroline began rolling over, both ways (front to back and back to front) around 5 months.  She […]

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New mom with questions

November 29, 2013 by

Hello everyone! My son Elijah was born almost 2 months ago and right away the doctor mentioned a possible chromosomal disorder, so the possibilities have been weighing on me for a while now. However, we finally received his diagnosis of WHS on Monday of this week. I’ve been researching all I can and I’ve read […]

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For those of you that know us, the past 2 months have not been good ones.  Once Emily turned 6 months old, things seemed to rapidly go downhill.  First she got a cold that just wouldn’t go away.  Then she had to be hospitalized for 4 days for a silent UTI.  She is still fighting […]

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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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at times i catch myself sitting and thinking way to much. more so when sitting in the waiting room at the dr’s office or the lab. yesterday for example i saw two different kids. one perfectly fine and singing a long to spongebob’s theme song and another sitting in a wheelchair with a few noticeable […]

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As we’ve gone along our journey we’ve had the greatest support from family and friends.  This is everything to us as we don’t walk alone. We Wear Orange for………                                 . Phia’s Grandparents, (while supporting another grandchild’s football game) proudly wearing orange. […]

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We finally have evidence of receptive language. See the post on Isabella’s blog.  

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Purple to Orange

October 31, 2013 by

As I go to unpack, another file box, from our recent move.  There it is.  I pull out the purple (“puhpo”, as Sophia would say) folder. As I open the stuffed folder that holds all the information given to us about Sophia’s diagnosis last year, I’m silent and still.  That hard-to-swallow feeling is back in […]

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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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Magnolia is 3!

October 26, 2013 by

October 5, 2010, a tiny 3lb 7oz 15.75 inch long baby was born at full term. We had received the WHS diagnosis while we were pregnant so we were prepared for her birth. As prepared as you can be for the complete unknown. Today Magnolia is 17lb 13oz and is 31 inches tall. Here is […]

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Tyler Jay’s story x

October 20, 2013 by

Hi all I’m new to this site and just wanted to introduce myself and my two boys. I’m a young mom with two boys aged 22 months & 10 months. During my first pregnancy, they were worried that my baby wasn’t growing properly, I had multiple growth scans and at 24 weeks they told me my […]

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where does someone begin with this. I would say it all started maybe sometime around the summer of last year. I was sent to the hospital and found out I had a miscarriage to a pregnancy I didn’t even know about. that day I was told I couldn’t have kids or else I wouldn’t survive. […]

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And then we were four…

October 17, 2013 by

Throughout Vicki’s recent pregnancy we were frequently asked by friends, family and colleagues whether Mia was looking forward to becoming a big sister. In truth, it was hard for us to tell one way or another – at most she seemed indifferent to the whole affair and, despite us talking to her about the imminent […]

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Charlotte Ellen

October 16, 2013 by

Well…..Our girl is 1!  Time is flying by and I try to remind myself to enjoy the here and now and not worry about the what will be’s.  We have been battling a fever for 8 days now and it has been a bit rough, but this too shall pass.  I worried that she might […]

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I’ve been contemplating on whether or not I wanted to write this post for several weeks.  I actually typed it up on my computer thinking that I could trick my sub-conscious into being satisfied with the fact that I had at least written down what I was feeling, but that didn’t work.  So before I […]

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Elsa: 21 Months

October 7, 2013 by

We wanted to share some updates on Elsa — as she passes the 21 month mark: Prevacid: After being told by many a doctor that Elsa is “just a pukey kid,” last week she went on Prevacid for reflux. It has already made a remarkable difference. Normally, a cold leads to 3 or more pukes […]

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