Posts by author: Anitra
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 →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 […]
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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 […]
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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 […]
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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 […]
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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 […]
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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 […]
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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!
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, […]
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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 […]
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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 →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 →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 →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 →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 →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 →It’s that time again, folks! Halloween is around the corner. And that means we’re kicking off our annual Halloween costume event. Every year, when the leaves begin to fall, and Oct. 31 draws near, our kiddos don their Halloween best and share their awesome costumes with us. It’s a tradition at Wolfhirschhorn.org. You post a […]
Continue Reading →Wolfhirschhorn.org recently had the opportunity to connect the parents of a baby with WHS to a family with an older child with WHS. That’s because in addition to sharing stories about our kids, Wolfhirschhorn.org also maintains a database that enables us to make these important relationship matches. If it’s been a while since you’ve updated […]
Continue Reading →Our younger two daughters (ages 4 and 2) are often all over Elsa. It can be pretty cringe-worthy. They rub her cheeks and pat her head. They hold her hand… then squeeze it way too tight. They literally hug (choke) her with love. All day. Everyday. If they are unattended with her, things can go a […]
Continue Reading →When packing for vacation, and maximizing the backend our van, it can be hard to know what to bring. Beyond the essentials, my husband and I always hash out what positioning equipment will give our daughter Elsa the most comfort, access and independence, given the unique environmental factors of our destination. For our weeklong vacation earlier this month, […]
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