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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 […]
Continue Reading →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.
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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 →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 […]
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 →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 […]
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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 →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 →Hi Everyone, Well, I’m a little late on this post as Paige turned two on April 27. What can I say? I’m on special needs time! (Always running late) Paige is now approaching 27 months, and while her accomplished milestones list is short, she is actually doing very well. Her health has been exceptionally good, […]
Continue Reading →April 16 is Wolf-Hirschhorn Syndrome Awareness Day. What will you do to spread the word and increase understanding among those in your sphere? Share your pics and stories (and the pics and stories of others!) on April 16: On Wolfhirschhorn.org On Facebook On Twitter (@wolf_hirschhorn) Thank you all for your support of and contributions to […]
Continue Reading →Sophia taught me this from the beginning of knowing her spirit in my womb. Of course, then, we did everything…together. Now it takes more purposeful focused attention to detail. Here’s my latest understanding “of getting” Phia, by listening to her words and by participating with her actions. “Shopping, Mom? Go shop?” She saw the shopping […]
Continue Reading →We’d love an update on how your kiddo is doing! What are the challenges you’re facing this week, or in the coming months? Are you contemplating a procedure, or do you have surgical outcomes to share? How is therapy going? What new things have you tried? Do seizures continue to be a big factor, and […]
Continue Reading →We’re excited to share a fun T-shirt design for Holiday 2016! This new wolfhirschhorn.org T-shirt features a superhero theme because it can’t be denied: Our kids are real-life superheroes, who everyday face herculean obstacles and defy the odds. The shirt reads “Real Stories. Real Power.” That’s because here at wolfhirschhorn.org, we believe there is real […]
Continue Reading →If you’re new to Wolfhirschhorn.org, you may not know it, but you are about to be inundated with some serious cuteness… Every year at Halloween, our kiddos put on their best costumes and wow us with creativity and inspiration. It’s a tradition at Wolfhirschhorn.org to share our costumes with each other on the website, and in […]
Continue Reading →Hello everyone, my husband and I are planning on attending the convention in LA in July , does anyone have any info on that if so we would appreciate it so much. Thanks
Continue Reading →Hi all, I cannot believe our Elsa is 4. Years 1, 2 and 3 were so full of medical issues and doctors visits and life coordination. Ever since she turned 3, it seems we’ve fallen into a rhythm of sorts. Don’t get me wrong, we have our tough times. And we still somehow have 2 […]
Continue Reading →Hi Everyone! We are newcomers to the world of Wolf-Hirschhorn. My son Riley just turned 5 months old yesterday! Every day is a new day with our bright little baby. To just give some background. My husband and I are first time parents and did not know until he was 7 weeks old that our […]
Continue Reading →Hello Everyone, Well, here we are at the 9 month mark. This journey has been immense, and it has only just begun. Paige has been a pure blessing. She has saved my life in so many ways. She teaches me more than I would have ever known before. Her needs are so simple and so […]
Continue Reading →My sweet little witch for Halloween!
Continue Reading →Tony is now 12 years old and Halloween is always our special holiday as a family. (His birthday is October 29th) We always make our own costumes and try to theme the whole family around each other. We love Batman so “Batman and Robin” was definitely fitting for us! 🙂
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