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. 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, 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 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.


66 Responses to New Parents

  1. latonya says:

    my name LaTonya Hogan’s I stay in st.louis Mo I have a 8month old daughter that was born with whs..she only 10lbs ..when the doctors first diagnose her she was 2weeks old I didn’t understand..I’ve blame myself I didn’t smoke nor drink. were did it come from. I just started getting on the internet and started researching bout it heard different story and amazing stories also..I would love to meet and see kids with my daughter syndrome ..

  2. Hello My Name Is Carly Williams I Have A Son Who Is Five Months Old He’s A Little Fighter I Found Out My Son Had Wolfhirschhorn Syndrome When I Was Eighteen Weeks Pregnant And Since The Doctors Told Me All They Did Was Try And Get Me To Get Rid Of My Little Boy I Refused To Listen To Any of Them And For The Rest Of The Pregnancy I Just Had More Bad News I Carried On Putting A Brave Face On I Was Sixteen When I Found Out I Was Having My Little Boy I Turned Seventeen When I Found Out I Was Pregnant And I Was So Excited He Was Born On The 25/03/14 He Weighed 3 Pounds 15 Ounces I’m Still Struggling With Coming To Terms With What We All Face I Just Feel So Alone And I Just Want To Cry I Feel Like I Did Something Wrong For My Little Boy To Have This Syndrome But He’s Now A Little Fighter He’s My Everything He’s My Rock <3

  3. casen says:

    I know how you feel, my baby casen was also born at 3 lbs 15 ozs. He was born on April 17th 2014. He was diagnosed with wolf hirschhorn syndrome 3 weeks after he was born. So far all is good with casen at the moment. He’s smiling and tryn to spat at the little toys on his monkey bouncy. We love him dearly he is so sweet and we couldn’t imagine life without him! If you ever need someone to share stories with,I would love to share stories about our little ones. We would love to hear how your little guy is doing! :)

  4. Shelbi says:

    Hello,I am a first time mom and I had my daughter at 37 weeks she was 4 pounds 10 ounces and 18 inches long. I had Iugr and they didn’t want a still birth. she is now 2 weeks and 3 days old! We just found out that she may have whs.. She has been in the nicu since she was born due to her getting tired when she starts bottle feeding! We are at 4 bottles a day and the other 4 feedings are in a tube that go into her belly! She doesn’t have many of the signs/symptoms of whs.. They are doing an ekg, heart scan, and a sonogram on her kidneys to make sure everything is ok! It is super scary but our little girl is a fighter!

  5. ilia costa says:

    Hi my name is Ilia and we live in South Australia and I have a 17 year old son who was only recently diagnosed with WHS a couple of years ago. Benjamin was born at 39 weeks and weighed 5lb 4oz he was born with severe club feet but with physio and a couple of operations back 10 yrs ago is walking real well. He is also mentally challenged. When we were told of his syndrome I had never heard of it and would love to hear from other parents and there children on how they cope and any milestones they have. Benjamin is a beautiful boy and gives us so much in return.


  6. Lottie says:

    Hi! I’m a foster mom to an adorable 3mo with WHS. I have so many questions and would love some help! For example, does anyone have any suggestions on specialists she should see? So far she seems to have good leg/arm movement-should we be doing exercises?

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