In 2007, there was nowhere to go. A brief search on the internet brought back fear and pain. For many years, The Physicians’ Guide to Rare Diseases was the primary source of information to families searching for answers.  Every geneticist reiterated the same message: your child won’t make it. But now we have the truth. […]

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Elsa: Summer at 2 1/2

July 18, 2014 by

  Hello all! Just wanted to share a quick update of Elsa at age 2.5. – Right now, she is just shy of 23 pounds and 34 inches long. Her hair is really growing now. Most of her teeth came in at about 27 months. – Feeding hasn’t been going great since her last seizure, in April […]

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Mia – Summer 2014

June 24, 2014 by

Hello friends – it has been a while…   Mia is now three and a half and well-settled into her role as big sister. At 11 months, Finn is already considerably heavier, stronger and more mobile than his ‘big’ sister –but they get on like a house on fire and she still lets him know […]

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Baby Casen

June 10, 2014 by

Hello everyone, my husband and I are new to the site. On April 17th 2014 we gave birth to a baby boy 3lbs 15ozs , 16 inches long. He was born with a natural serk, small recessed chin, and thin ears, my husband and I thought nothing about  it but the doctor decided to run […]

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Natalie

June 7, 2014 by

Hi.. I am a new user. I have a 25 year old daughter with WHS.  She is non-verbal and not potty trained. She is mentally between 12-18 months in age.  She is ambulatory and loves to walk.  Natalie is happy, very loud, and loves routine.  She is healthy, not on any medications, and about 4 […]

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Schooling – Esme goes to a local special school two days a week and has all her therapies there (speech, language I think are the only ones she now has). She goes to a mainstream nursery half a day a week with her sister. St the recent annual review her special school recommended a split […]

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Esme Update

June 4, 2014 by

Hello, It’s been a year since the last post so just a quick update. She is now 4. Since she started independently walking at the time of last year’s post she has come on strong in that regard. She will struggle with deep steps and has to shuffle bum down stairs and steps but can […]

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Nayana turned two last week! Time really does fly! I decided it was time for an update.I also have a few questions for my fellow WHS parents.It has been a while since I posted an a lot has happened.Nayana has since had her cleft lip repaired and last April she joined the g-tube club. In […]

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Officially 1 year old!

May 15, 2014 by

I can’t believe that Caroline is 1 year old already! On one hand, looking back at everything we have gone thru in the first year, whether it be receiving her diagnosis or what seemed like endless doctors appointments at one time, it seems like it’s taken 1 a while to get here. But then again, […]

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We’re Crawling!!!

April 23, 2014 by

Nathaniel finally started crawling March 1st. Since my last post, we’ve had a new addition to the family. Nathaniel is now an older brother to Noah. It’s funny because Nathaniel is 3, weighs 24lbs and is 36″ long. Noah is 5 months, weighs atleast/minimum 25lbs and is 25″ long. They wear the same size clothes(3T), […]

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National 4-P Day!!!

April 16, 2014 by

Today is National 4-P day, Wolfhirschhorn Awareness.  Here’s Jordan wearing her 4-P tshirt.  I told her is was 4-P day and she gleefully replied “4-P for me!!” She cracks me up.  4-P accessories are available on the 4-p support site.  Enjoy your special day families.

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Need a doctor

April 15, 2014 by

Can anyone recommend a Dr. that they’ve dealt with, and like, that specializes in WHS? We live in Wyoming and don’t have anyone that understands our girl.  In fact, we just lost the best pedi neuro we’ve ever had.  The Dr. that replaced her is a sleep specialist and informed us that she knows nothing […]

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Meet Jordan

April 14, 2014 by

This is an addition to “Ten years in”. Just wanted to introduce you to our sweet girl. And in case you all didn’t know, April 16th is National 4P awareness day!

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Hello All, I am so happy to finally be joining this awesome website made up of such a unique community. My Jada girl was diagnosed with WHS when she was about 2 weeks old. I had a pretty rough pregnancy. I was put on strict bed rest at 20 weeks, hospital bed rest at 31 […]

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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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