In three years Bryan has grown from our tiny little peanut into our big chunky monkey so we thought this costume was fitting. This is the first year he went up to a few houses to trick or treat independently and really seemed to enjoy himself, though the South Texas heat tired him out quickly. […]

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Elsa: Halloween 2016

November 2, 2016 by

Elsa: Halloween 2016 Minnie Mouse was the look this year! And thankfully, it was warm-ish this Halloween, in our neck of the woods. I made a special request that Elsa was in a stander-on-wheels for the parade again this year, which her teacher gladly accommodated. It means so much to me, to see her up on […]

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I didn’t have enough time to complete the whole costume in time to enter the 2016 Halloween contest, but I still wanted to show the final piece. We had such a blast! These guys were the ONLY characters from Up. It was the best. They had so many compliments and photos taken. Hope everyone had […]

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Halloween 2016

October 31, 2016 by

My sweet Caroline was a bumble bee this Halloween! She is now 3 years old, and it’s been a while since our last update, so here is a quick one! She started school officially this past August. She is in the Pre-K3 program at our local school and goes from 7-10:30 M-F. She is still […]

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Since our January update, when she turned 6 months, a lot has happened in our lives: Today we are overwhelmed with joy to see how far Madison has come, as  she has meet most of her goals that were set regarding her weight and height.  During her 2 weeks Wellness Check, her target weight for […]

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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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Our family just wrapped a big weeklong summer vacation. It was a marathon. Can anyone relate? The packing… the maneuvering… the stress… and the fun, too, of course. On the trip: My husband and me, our girls Elsa (4.5 year old with WHS), Cecilia (3 years) and Lola (1.5 years), and 15 immediate family members in […]

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It has been a while…

July 26, 2016 by

Can it really be 2 years since I last posted here? I guess so! Well, a few of you have messaged me asking for a Mia update, so here are a few pics from the past while… Mia turned 5 in January and started school in August last year, where she has been doing great. […]

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Elsa’s eye surgery

June 8, 2016 by

In March 2016, Elsa had eye surgery. I won’t bury the lead, as they say in the newspaper industry… The results are crazy good.  We have patched her eyes on and off for several years to address drifting. It seemed to work for a while, and then around age 3, not so much. Especially when […]

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Greetings WHS Family, As we have already made our 1st trimester update, we now will share with you all our Daughter, Madison (born Jul. 19, 2015) 2nd Trimester of life as her journey with WHS continues: As parents, it’s an everyday learning process as having a 6 month old baby that’s basically a newborn in […]

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Greetings WHS Family, As we already made our formal introduction of our Daughter Madison Sergeant, we will proceed to share what life has been like. After 4 days, we left MUSC NICU at 5:30pm with the instructions to take our baby girl the next day to her Pediatrician. At this moment I was anxious, fearful, […]

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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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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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