Introducing Madison

March 3, 2016 by

Greetings WHS Family, We are new to the Wolf-Hirschhorn Family Organization.  Our baby girl, Madison Lilliana Seregant was born on July 19, 2015.  She weighed 4lbs, 3.2 ounces and 17 inch long.  She is now 7 months and weighs 12 pounds and 24 inch long. Finding out that Madison has been diagnosed with WHS: Week […]

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Liam’s wonderful father added this post to his Facebook account.  I thought I would copy and post it here because it was so beautifully written and so heartfelt.  We want to share our story with the world, but it has sometimes been very difficult to do so.  We are so very blessed to have Liam as our child.  He has […]

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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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Quinn ~ Halloween 2015

November 4, 2015 by

Quinn was Melanie Daniels from Alfred Hitchcock’s “The Birds” this Halloween.  She had lots of fun dressing up and looked super cute!  

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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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Baby Casen 2015

November 2, 2015 by

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 […]

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My puppets!!

November 2, 2015 by

Nathaniel is clearly the unhappy one…unfortunatly this was the only good one I (the puppeteer) have of both he and Noah. Hope everyone had a Super Happy Halloween!

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Ethan: Halloween 2015

November 2, 2015 by

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.

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Elsa Halloween 2015

November 1, 2015 by

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 […]

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Sergio – Halloween 2015

November 1, 2015 by

Sergio is a strong little soldier. He faces little battles everyday and he always manages to persevere through it. This past year he has overcome a lot of obstacles. Sergio started school for the first time this fall and since the start he has been battling a multitude of germs and viruses that have come […]

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It’s our 4th year celebrating WHS Awareness, with the world, on this Halloween Event!  Our Lil’ Mermaid, her character shimmers so bright.  She hit land and made a splash, with her fun size love.  Last few years we captured her saying, “Trick or Treat” and it is sweeter than Halloween candy.  She believes you get […]

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Here’s a pic of Esperanza, age 6, as a lady bug.

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Jayna Halloween 2015

October 30, 2015 by

Jayna was garfield. She is 8 yrs old. She loves going trick or treating. But was not happy about the head.

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Halloween Event 2015

October 27, 2015 by

                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 […]

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Elsa: Reading with Switch

October 8, 2015 by

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 […]

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