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 […]
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 […]
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 […]
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 […]
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 →
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 →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 →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 →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 →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 →Hi everyone! Thanks so much to all who shared the Summer Fun Slideshow last month. As of today (Aug. 23), it’s been viewed 424 times!! We are thrilled that so many were able to see our kids enjoying summer. An extra thanks to the 25 families who participated in the event. We plan to do another […]
Continue Reading →We’re excited to share the WHS Summer Fun Slideshow! A total of 25 families – with children from age 9 months to adults age 22 years – contributed their amazing photos. Please share the link to this page with your family and friends. Wishing you all a safe, healthy and FUN summer! With love, The Wolf-Hirschhorn.org […]
Continue Reading →Summer is off an running. Let’s be real… how are you doing? On our end, we’ve done a few camps and used a daycare program sporadically, to get a little free time. And to give Elsa’s mobility a boost, we’ve been pushing her hard on walking. Naturally, it takes a lot of time and energy. […]
Continue Reading →I don’t want to write a super detailed post on this topic, but I did want to share that Elsa is going on the potty… regularly!! (She is age 6 1/2, and we’re just now officially making it part of our routine.) I think this new development is the result of a myriad of things: […]
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 →It’s easy to be hard on yourself, as a parent. As the mom of three small kids, things are busy. And often I take the path of (not least resistance, but…) greatest efficiency. I’m always trying to streamline, always thinking five steps ahead. Something I certainly don’t do enough: Make Elsa the center of attention. […]
Continue Reading →Hello WHS family, As you all know Madison was the winner of the Halloween 2017 well she received a Foamnasium set two weeks ago. We would like to say thanks to Anitra, Elsa and all who purchase the hats from the fundraiser. Madison is very exited about her prize and it’s a great addition to […]
Continue Reading →The weather has been pretty rough so far this winter, so we’re maximizing our indoor time. This has brought about some fun updates, which I’m excited to share… While we await a new standing frame, Elsa’s been standing at a chair that’s actually a decent height to facilitate up-right time. Last week, she surprised us […]
Continue Reading →
Happy New Year, folks! Once again it has been too long… Life is busy, but all good. Mia will turn 7 next week, she’s doing great and continuing to follow her own leisurely but steady developmental curve. We appear to have broken the back of winter without any major illness and Mia’s epilepsy, thankfully, remains very well […]
Continue Reading →Sending a BIG thanks to the following kiddos for entering the 2017 WHS Halloween event! Your costumes were amazing, and so were your updates! Madison… Juniper… and Bryan! One of these kiddos will win an awesome Foamnasium set! The other two will win a fun prize. Elsa, my little gal with WHS, and her sisters selected the […]
Continue Reading →As family and friends of children and adults with WHS, we are all on the same team. And through wolfhirschhorn.org, we can support each other and cheer each other on. In this spirit, we are announcing the 2017 holiday fundraiser item is… a Team WHS hat! The stories we share here at wolfhirschhorn.org are […]
Continue Reading →Bryan really got into the Halloween spirit this year and thoroughly enjoyed trick or treating with his sisters. This was his most independent year yet. It was great seeing him open his own bag for candy and making sure his sisters got some as well. And at every place we stopped, he was sure to […]
Continue Reading →
JuniperMaya is 27 1/2 months old. She has made large strides in her ability to interact and communicate. When we ask her questions she loves responding with “yeah”. She says “hi” and “Mama”. She likes to babble while playing. She signs for food, milk, more, diaper, and her own sign for pick me up or […]
Continue Reading →Our little girl has wings! Elsa, now 5 1/2, was a fairy this year for Halloween. She’s standing against the wall here – but still. Looking so good in standing these days. Can’t wait to see everyone’s costumes this year! Reminder that if you post to the WHS website, you could win an amazing prize […]
Continue Reading →