New Parents Start Here
If you are a newly diagnosed parent of a child with Wolf-Hirschhorn Syndrome, this is the place to start. Our site has loads of information about everyday people in your shoes. wolfhirschhorn.org is here for parents and family to learn and share experiences, challenges and emotions with others. This is a place where our children thrive. This is a place where you can be you.
If this is your first visit to wolfhirschhorn.org, we recommend that you read the About Wolf-Hirschhorn Syndrome page, but keep in mind that all of our children are different. The worst case scenarios that you may have read on other web sites may not be what you should expect to experience. In fact, there are great stories that exist all around you while you are on this site. None of us that contribute to wolfhirschhorn.org ever expected to be here, but we are. And now we know what it is all about. We believe in our kids, we celebrate their lives, and they give back to us more than we ever expected.
So start now and read Our Stories, but come back to this page often as more resources will be added on a regular basis.
My daughter, Maliyah,just turned 11 this week. When we first were given her diagnosis,we were overwhelmed with the negative information. It was a scary prospect.Maliyah walks,talks,participates in special olympics for her area as well as the state games.She is in the fifth grade at school. She has a 1:1 para and is learning to read and do basic math. She identifies all of the safety signs in the school and delivers the mail in the teachers room. She knows her phone number and calls her sisters daily in three different states. She enjoys using her tablet and is an avid sports fan.She is a social butterfly who makes an impact every where she goes with her family with her great sence of humor.While there have been challenges,we are blessed that she is a part of our lives.
Boa noite, mimha pequena Eloá tem 02 anos e 06 meses e agora foi descoberto que ela tem VHS, estou muito confusa, embora sabia que algo estava errado. Minha pequena nasceu com atresia de esofâgo, corrigida aos 03 dias de nascida. Desde então sua vida não tem sido nada fácil, ela ainda não anda e não fala ,seu desenvolvimento é bem atradado. Hoje nossa maior preocupação é com o ganho de peso, ela só pesa 08 quilos. Ela come pela boca, mas é uma dificuldade para ganhar peso e com isso sua imunidade é bem baixinha, a dificuldade do ganho de peso é normal ate que ponto dentro dessa síndrome? Tenho muitas perguntas, mas minha cabeça ainda ta tentando entender tudo. Obrigada!
[translated from Portugese in Google Translate by Ross]
Good evening, my little Eloa is 2 and a half and has just been diagnosed with WHS, I’m very confused, but knew something was wrong. My little one was born with esophageal atresia, corrected at 3 days old. Since then her life has not been easy, she still does not walk or talk, development is very delayed. Today our main concern is weight gain, she only weighs 8 pounds. She eats by mouth, but it is a trouble gaining weight and as such her immunity is very low. Is the difficulty of weight gain normal with this syndrome? I have many questions, but my head is still trying to understand everything. Thank you!
Yes, not gain weight its part of the syndrome, my son Alan was diagnose 3 days after birthday, he was taken enfamil 22 calories baby formula, and now pediasure, he is 2 years old, he is at 15lbs
My beautiful little girl Shadyn was diagnosed at 2 weeks old. She is now 1 year. She has a small hole in her heart and may need surgery at some point not sure yet. She has been in and out of the hospital. She can not sit up or hold her bottle. Shis at about 4months developmentally. She has started to roll over and she giggles. She doesn’t eat food just doesn’t like it yet. She was 4lbs. 9oz. At birth and is now 12lbs. I am not sure what to expect as time passes so all I can do is hope and pray that she continues to make progress. She has had tubes put in her ears to help her hearing but she is still very hard of hearing. Next step is aids. If any one can help me to understand what to expect I would appreciate it.
Found out today that my little girl has WHS and only after 5 years we found out
My husband and I found out that our little girl has WHS about a month ago. She is 17 months old. This has been very hard to come to grips with, but reading the stories on this website has been very encouraging. I only wish I discovered this website first when I googled Wolf-Hirschhorn…