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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 […]
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! 🙂
Continue Reading →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 […]
Continue Reading →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 […]
Continue Reading →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 […]
Continue Reading →See our sweet bunny pop out of the top hat to perform a magic ‘trick’ on Halloween!
Continue Reading →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: – […]
Continue Reading →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 […]
Continue Reading →Hey everyone, Casen is currently 18 months old and weighs 14.9 lbs. he is strictly g-tube fed and will not eat by mouth. He doesn’t seem to be getting bigger, he is still on infamil for preemies 5 ounces every 3 hours. If anyone has any suggestions on how to get him food besides the […]
Continue Reading →Ethan was a bat this year for Halloween! I’m a little biased but I have to say he’s much cuter than the bats I’ve come across. We had a great time trick or treating with his older brother and were thankful everyone was healthy for it.
Continue Reading →Elsa was a swan for Halloween this year — quite fitting for her calm, graceful demeanor, I must say! Her costume was a mash up composed of a faux fur hat that my sisters and I wore long ago when playing dress up and a hand-me-down dance recital costume. In a pre-school parade filled with super […]
Continue Reading →Here’s a pic of Esperanza, age 6, as a lady bug.
Continue Reading →Jayna was garfield. She is 8 yrs old. She loves going trick or treating. But was not happy about the head.
Continue Reading →Halloween is just a few days away, and many of you are surely getting your child’s costume prepped and ready to go. In addition to hitting your school parade and neighborhood trick-or-treat circuit, be sure to participate in our annual WHS Halloween Costume Event, right here at […]
Continue Reading →Elsa has had switches to use for communication for quite some time, but I don’t think I’ve ever posted how we use them. Here, we’re reading a book made by her teacher at preschool. It’s fashioned after Brown Bear, Brown Bear. But instead of the flow of colors and animals, it features real pictures of […]
Continue Reading →This summer, we went to a new neighborhood park with lots of nice shiny equipment, including a sweet child-sized black gloss finished picnic table. Eager to try out Elsa’s more independent sitting skills, I put her on her bottom, on the seat facing out onto the concrete pavement below. Perhaps you can guess what happened next. I looked […]
Continue Reading →There is nothing terribly momentous about this video, but I wanted to share. This is just Elsa playing with one of her favorite toys in our kitchen… a toy that her sister stole from our speech therapist’s toy bag, a common occurrence, unfortunately. (Why are their toys so much cooler than ours?? Even the oldies […]
Continue Reading →Hello everyone we just wanted to give an update on baby casen , he resently had a his big 1 birthday!!! Casen has been doing very well, he has only had two small seizures since December , he’s doing very well on keppra. Casen is smiling , grabing at toys, he is such a happy […]
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Greetings, We are new to the Wolf-Hirschhorn family. Our daughter, Paige Elizabeth, was born on April 27, 2015. She weighed 4lbs, 3 ounces. We found out last Thursday that Paige has been diagnosed with WHS. She is currently still in the NICU due to feeding issues. We are pretty certain she will have to come […]
Continue Reading →Hope you all had a wonderful holiday season. On behalf of the wolfhirschhorn.org community, I’d like to send a HUGE thank you to everyone who participated in the 2014 Halloween Event and Holiday Fundraiser… For posting pics of your kiddos in their costumes, purchasing tote bags, and sharing the posts with your social networks, families […]
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