Noelle

November 30, 2021 by

Noelle was born June 3, 2014 weighing in at 3 pounds 1 ounce. Little I know how much this precious child would teach me. Noelle is currently 7 years old, weighing in at 27 pounds, has bouncy long curly blonde hair and the most contagious smile. When time allows I will post more about her […]

Continue Reading

Quinn – 2021

November 30, 2021 by

It has been quite some time since I’ve given an update on Quinn! She is turning 10 on December 1st. Where does the time go? No, really?!     We have kept Quinn pretty locked down since the beginning of Covid and I will not lie – it hasn’t been easy on her. Quinn is […]

Continue Reading

Elsa, 9, Fall 2021

November 28, 2021 by

As 2021 comes to a close, and Elsa approaches her 10 year old birthday, we have lots of updates! This summer, we vacationed in Missouri and Arkansas, which brought lots of boating time for Elsa. She absolutely loves the vibrations and breeze and misty spray that go along with lake life. We hopped on for […]

Continue Reading

Lisa

November 9, 2021 by

Hi everyone.  We are new to this life, in a way.  I say new, because it has not been until a few months ago that we finally put a name to what makes Lisa unique. My name is Michael.  Lisa is my big sister, and the joy in my heart.  Lisa is 59 years old, […]

Continue Reading

It’s been awhile since I’ve posted about Frank. He is doing well! He is currently in sixth grade and loving middle school. He spent six years at an elementary school in various self-contained classrooms, and we were very happy with that set-up. We intended to have him retained for a year so he could stay […]

Continue Reading

Mia 2021

November 2, 2021 by

Hello everyone, hope you’re all well. Mia will turn 11 in January, and she’s doing great. She still uses her wheelchair and walking frame, but can now also walk holding a hand, and recently completed a 5km walking challenge over the month of October. She wears a full torso brace to help with her scoliosis, […]

Continue Reading

Post-an-Update iPad Giveaway!

September 28, 2021 by

Hi WHS friends and family! It’s been a while, and we’d love to hear and see what’s going on in your world, here on the wolfhirschhorn.org website. If you post an update on wolfhirschhorn.org between Oct. 1 and Dec. 1, you’ll be entered to WIN… … an 11-inch iPad Pro! Psst, if you enter, your […]

Continue Reading

A WHS Day Hello

April 16, 2021 by

Sending hugs and hellos from the Schulte family today, on Wolf-Hirschhorn Day! We are wearing our jeans, in support of rare jeans. It was a little rushed on our way out the door for school, but we got a pic! I also wanted to share some fun news… today is also the cover reveal of […]

Continue Reading

Elsa: 9 years old

February 27, 2021 by

Our daughter Elsa recently turned 9 years old. A third grader! Crazy. It’s been a wild and, at times, extremely difficult year, due to Covid and remote learning. But we’re hanging in there. She’s grown a ton and has been been making strides in quite a few areas. When the first really bad reports of […]

Continue Reading

Coronavirus vaccine

February 9, 2021 by

Has anyone one of our kids received the COVID 19 vaccine ? I know there have been our kids who have had serious reactions to certain vaccines snd I have not given Joe the vaccine waiting for more information in it.

Continue Reading

Elsa update: Fall 2020

October 12, 2020 by

Happy Fall everyone! I wanted to share an update about what’s new with Elsa, age 8, these days… We aren’t back to school full-time (yet?), but have established a rhythm of sorts. She goes into her school for therapy for an hour on Monday and an hour on Wednesdays, and goes to outpatient PT at […]

Continue Reading

It’s been a rough couple of months, since COVID-19 began sweeping through the world. Our family has followed the guidelines of our state closely. We have no idea how our daughter Elsa (age 8, who has WHS) would do, if she got COVID. She’s been hospitalized numerous times, for operations and seizures, and one of […]

Continue Reading

Elsa turns 8 years old

February 10, 2020 by

Elsa is now 8 years old – a young lady! She continues to make slow-but-steady progress across many areas. She is sooooo darn smart. Her personality remains persistently sweet, and she is always excited to engage (and snuggle) one-on-one with friends, family, classmates and therapists. This past year brought challenges, of course, particularly with self-hitting […]

Continue Reading

Update on Paige

January 25, 2020 by

Hello Everyone, It’s been a really long time since we’ve done an update on Miss Paige.  She is now 4 years old and will turn the big 5 on April 27th. She weighs 25lbs and is about 37 inches.  She isn’t talking, but she always manages to let us know what she needs.  She isn’t […]

Continue Reading

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!

Continue Reading

The Johnson Family

May 24, 2019 by

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!   […]

Continue Reading

Winners Announced!

May 16, 2019 by

Happy spring to all! Thanks to everyone who updated their information with the Wolfhirschhorn.org Family Location Database last month! Here are the 5 winners of the headphones: The Beal Family The Brunson Family The Gallaro Family The Guidry Family The Worlitz Family (Winners were selected old-school style: names drawn from a bowl.) Thanks again, everyone, […]

Continue Reading

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

Thank you SO much to all who have ordered the Superhero Story Book, our 2019 Valentine’s Day Fundraiser. You are superstar supporters, and we appreciate you and all you do for our kids! If you haven’t ordered yet, don’t worry… there’s still time! Orders are due by EOD this Friday, Jan. 25. The Superhero Story Book […]

Continue Reading

Love is our children’s greatest superpower! That’s why we’re so excited to launch our 2019 Valentine’s Day Fundraiser: The Superhero Story Book! This colorful, inspiring paperback photo book features 36 superheroes – children with Wolf-Hirschhorn Syndrome, who wow us every day with their bravery and heart. Thank you to the families who shared pictures of their awesome kiddos! […]

Continue Reading

If you’ve ever wondered what a real superhero looks like, we have the answer! The Holiday Fundraiser item is a Superhero Photobook. Cover reveal… Within the pages of this special book, you’ll find the photos of 36 superheroes – children with Wolf-Hirschhorn Syndrome, who wow us every day with their bravery and heart. Here’s a […]

Continue Reading
Continue Reading

Introducing our sweet Bethany!

November 13, 2018 by

Hello!  We are new members of this site, and I am so excited to introduce our sweet Bethany to all of you!  Our Bethany was born at around 36 weeks, weighed 4lbs 1oz, and she has been our sunshine girl ever since the first moment we laid eyes on her.  She has an awesome 10 […]

Continue Reading

Family. Joy. Hope. These are the very best things about the holidays – and also the things that unite us, as a community linked by a shared diagnosis and similar path through life. One thing that brings tremendous joy and hope to many of us is getting to know other children with WHS. Simply seeing another […]

Continue Reading

Posting 2018 Halloween Pics

October 29, 2018 by

Halloween is just hours away… so this is a quick reminder! If you’d like to participate in our tradition of sharing Halloween photos, be sure to snap a photo of your child in his or her costume. This year, we’ll be sharing Halloween photos on Facebook only. Visit our community (Wolf-Hirschhorn Syndrome Awareness) to post a […]

Continue Reading

Turning 21

September 27, 2018 by

Its been several years since I posted. My last post I shared my sons story. An article titled Gods Handiwork. Joe will be turning 21 in a few months and this is such a milestone. I laugh when I think of the ignorance of some in the medical profession many years ago, “he won’t live […]

Continue Reading