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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 […]

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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 […]

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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. […]

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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: […]

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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 […]

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Center of Attention

April 9, 2018 by

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. […]

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And the 2017 winner is…

December 9, 2017 by

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 […]

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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 […]

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Officer Bryan

November 8, 2017 by

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 […]

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Connecting Our Families

September 25, 2017 by

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 […]

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Paige turned 2!

July 25, 2017 by

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, […]

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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 […]

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Together

March 27, 2017 by

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 […]

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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 […]

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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 […]

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Halloween Event 2016

October 24, 2016 by

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 […]

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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

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Elsa turns 4

February 27, 2016 by

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 […]

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Newcomer Alert!

February 26, 2016 by

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 […]

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Paige Turns 9 Months

January 26, 2016 by

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 […]

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Charlie!

December 1, 2015 by

My sweet little witch for Halloween!

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    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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The 2015 Holiday Item is ready for purchase! What is it this year? A newly designed wolfhirschhorn.org notebook. The 80-page orange notebook features this fun design and (literally!) uplifting message: The 2015 Notebook is the annual fundraiser benefiting the children of wolfhirschhorn.org. The cover reads “Going Up, Up, Up” – representing the trajectory of our kids and […]

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  Hi Friends, We hope that everyone had a safe and happy Halloween.  Wow – here we are.  Paige is 6 months old and this is the first update I’ve done since her birth announcement, which was created just after we received the diagnosis.  I have so much to say, but I have no idea […]

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We are extending the entry deadline for the Halloween Event to this Sunday, Nov. 15, 11:59 p.m. We want as many kids as possible to get the prize! This year, we will give all kids who enter the event a newly designed WHS notebook (along with crayons and stickers to make it their own). We […]

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Abracadabra DeLaney!

November 8, 2015 by

See our sweet bunny pop out of the top hat to perform a magic ‘trick’ on Halloween!  

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If you’re thinking of posting to the wolfhirschhorn.org site (for the Halloween Event or otherwise), but are feeling less-than-confident in your computer skills, here’s a quick step-by-step guide. If you have any questions while creating your post, just email me at anitraschulte@gmail.com. Looking forward to reading what you have to say! Posting to www.wolfhirschhorn.org: – […]

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Wyatt the Matador

November 3, 2015 by

We had a bit of a different Halloween this year.  My husband is in Spain for 15 months,  so that was on my mind as I was thinking about Wyatt’s costume.   I know when I think of Spain,  I always think of the running of the bulls.  What better way to show our love […]

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