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.

 

72 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.

    Thankyou

  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?

  7. Kate says:

    Hi, my husband and I recently received the news that our unborn child has WHS, and it is very frightening not knowing exactly what to expect. We have been told that her deletion size is quite significant-4P15.2. I am wondering if any of these children who are doing so well have this same extent of deletion? We are trying to get a better idea on what to expect for her. Any other advice for an expecting mother would be greatly appreciated.

  8. Lucho says:

    Hi I have a baby girl 8 months old, earlier this month we had the karyotype test , my daughter has this disease, I love her so much my litle baby girl… We live in Guadalajara Jalisco Mexico

  9. suzanne Ferguson says:

    My daughter, Savannah, also has a fairly large deletion but is doing great. She is 10 years old, walking and talking, and is in 4th grade. Please feel free to look at my Facebook page (Suzanne Ferguson)

  10. Hannah says:

    Kate, Welcome to the WHS community. I have a 5 year old with a deletion size of 8.9 mB. Don’t let the numbers intimidate you. There is so much controversy about the correlation of deletion size and severity of the syndrome. Each child really is quite unique. Riley started walking at 2 1/2 and while she isn’t talking, she communicates quite effectively. She has a few medical issues, but really is doing great. The first year can be tough just wading through all the appointments, but life will settle down quickly and you will have a new normal. I wish you the best with your pregnancy, enjoy it and your your new baby. Feel free to email me with any questions, cordillh@yahoo.com

  11. Cheryl Donovan says:

    Kate,
    Find me on facebook.
    Cdonovan524@gmail.com
    Im Liams mom, he’s 2 1/2.

  12. Wendy Gilker says:

    This You tube video presents a short idea of our life. My daughter Bree is now 34 1/2 years old. The foundation to our lives has been a Macrobiotic/Raw diet/lifestyle. I have cared for my daughter, basically alone most of these years. The last couple of months I have been making some You Tube video’s on the healing foods I have cooked for both Bree and myself so prolong her life, health and well-being. Bree is medication free, seizure free and rarely gets even a cold. The video’s are a way that Bree and I can share our lives with each of you and maybe they can be of help to you.
    http://youtu.be/x9Y74rLltuI is the first video.
    2-Wendy Gilker talking about her profoundly handicapped daughter Bree
    3-Bree’s Green Smoothie
    4-Bree’s Veggie Dishes
    5-Bree’s Grain Dishes Part 1 Brown Rice
    6-Bree’s Grain Dishes Part 2 Millet & Quinoa

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