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Families from Illinois and nearby Iowa met up in September for an afternoon of play and fun. It was incredible spending time together and hearing how everyone is doing. A huge thank you to Keely Absher, mom of sweet Paige, for setting up this awesome event! Hope you enjoy the pics!
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A huge thanks to Cori Johnson, who reached out to us at the site and has very kindly agreed to let us share this beautifully put together video about her grown-up family. I hope you enjoy watching it as much as I did, and I’m sure you’ll agree that they’re a pretty inspirational bunch! […]
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WHS Awareness Day is April 16. On this date, we share our experiences of knowing, loving and celebrating individuals with Wolf-Hirschhorn Syndrome, a chromosomal abnormality resulting from a deletion on the short arm of the 4th Chromosome. If you know a child or an adult with WHS, you’ve likely come to know that we are all connected […]
Continue Reading →It’s International 4p- / Wolf-Hirschhorn Syndrome Awareness Day – the day each year when we let those both in and outside of our immediate circle know more about the 4p- syndrome and the children and adults who are redefining what WHS means every day. If you have someone in your life with WHS, you likely […]
Continue Reading →As you start planning for your summer holiday, add one more thing to your to-do list: Update your information with wolfhirschhorn.org. This summer, we are updating the wolfhirschhorn.org Child Locations database, and we need your help. Here’s why it matters, and why now is the time for a refresh: When you received your child’s diagnosis, […]
Continue Reading →Hi all! Thanks to each of you who shared pictures of your beautiful children for the WHS website homepage. The photos say so much — about the innocence and spirits of your kids, about your love and care for them, and about the joy and wonder that they inspire in all of us. We can’t […]
Continue Reading →WHS Families: Do you have a positively adorable photo of your child, that needs to be shared with the wolfhirschhorn.org community? If you do, we want it for the website. Over the next few weeks, we’ll be collecting photos of our kiddos to be used in updating the homepage of wolfhirschhorn.org. We know it won’t be hard […]
Continue Reading →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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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.
Continue Reading →It’s going to be the road trip of a lifetime. I made my list and have packed my bags and made my go, do and see plans for when we reach our destination. However, I didn’t have a plan for when the travel does not start the way I want it to. In spite of […]
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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.
Continue Reading →So, we are in LOVE with the iPad and so is Tanner. I’m writing today to show you ours, how amazing it is and to possibly help you get one for your WHS child as well. When I first heard about and started to research the iPad and it’s “special needs” applications I knew we […]
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For those of you that have mastered the arts of the G-Tube, this information is probably old school. However, for those of you that are just venturing out into the feeding tube world, you might find this post helpful.
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Three years ago, I wondered if my daughter Kendall would talk at all. Well, she talks, and actually, it’s hard to get her to be quiet! Some of what she says doesn’t make much sense, but some of what she says has quite a bit of meaning. At the ripe age of 3 1/2, here are the Top 10 words she uses on a daily basis:
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It’s been almost 1 year since the original wolfhirschhorn.org site was launched and we’ve come a long way. Here are a few facts that I wanted to share with all of you.
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Of course, we all know the negative that is scattered about, with doctors and geneticists labeleing the early renditions of the syndrome as scary and ridden with horrifying outcomes. That is about to change.
Continue Reading →Evvie is about 45 lbs at 9.5 years. She can walk, but she tires easily and if she gets worn out, she has seizures. She loves to go places, and since she outgrew a stroller, we (mostly my husband)have just carried her on our shoulders when she gets tired. We can’t do that anymore with […]
Continue Reading →Hello? New teacher, or therapist, or doctor? Is that you? Oh hello… I just wanted to chat with you a second. To caution you. Or warn you. Please, tread carefully. You see, what you might not realize as you look at me, talk to me, tell me your opinions, our options, our lack of options, […]
Continue Reading →Sabrina’s Dr has given us a growth chart based on children with WHS from 0-4yrs old. Is anyone else using this? Just curious…
Continue Reading →I don’t recall the who exactly quoted that Wolf-Hirschhorn is a 1 in 50,000 frequency. This number has stuck in my head for 2 years now, which is how long we’ve known about Kendall’s diagnosis. We’ve all read about this number and wonder at times how we got selected as that 1 occurrence. Well, I have been really questioning the WHS rate of frequency for some time now and I really can’t seem to pin an accurate number on it.
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