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.

 

59 Responses to New Parents

  1. Sandra says:

    Hello Everyone! Camillah my beautiful little munchkin is 49 days today;) At 24 weeks pregnant I was told about her condition “Severe Wolfhirschhorn syndrome” I’m new to all of this and so I will like to reach out to all the parents who live in Chicago… Please Let me know!
    Thanks!

  2. Kristen Faccioli Licari says:

    I wish I had visited this section when I first discovered and started using this site….I’m not sure why I didn’t. How exciting it is to see so many cases of older WHS children. As the Mom of a 6 month old WHS female (Emily Rose), it is a pleasure and a relief to see that there are older WHS children out there, although it does not seem that their families are contributing much anymore….I don’t know whether or not I should be alarmed by that. Nonetheless, the simple fact that they are out there is of great comfort to me, as I worry about my little girl on a daily basis, although thankfully not nearly as much as I used to. If any of you WHS families of older kids are still out there, please let us know how you and your children are doing, as most of us have little to no basis for comparison and would love to hear more.

  3. amanda says:

    Hi my name is amanda and I’m 24 years old I just had my first son on July 17, 2013. On monday we found out that talon has whs. When I heard the news it broke me and now I’m not sure where to go and what I should prepare for.

  4. Sharon says:

    I am the parent of a 12 year old girl with WHS…She is in an SCD class but I would love for her to be mainstreamed with an aide…do you know how these parents got the school to agree to this?

  5. Chloe Bradwell says:

    Hi, my daughter is 8 weeks old. She was diagnosed with WHS at 10 days after id been told she had downs syndrome. On day 10 Iyla was suffering respiritry arrest and an circulatory collaps, she was intubated and ventilated and i was told she wouldnt make it, whilst this was all going on they told me her results of the genetic testing and that they had never heard of the syndrome. Once Iyla was on the road to recovery i started to look up the syndrome wich at first terrified me but looking through the photos and storys from parents i am alot more posotive for Iylas future. i am interested to learn more about what to expect for Iylas future, in her short life we have had many visits to hospital and are currently batteling the rsv virus and Iyla is once again ventilated. Shes such a tough little baby and is fighting this hard. I would be greatful of any advise you can give. Thankyou.

  6. tugfah says:

    hi my name is tugfah my daughter eleana is 5 years old and was diagnosed with WHS about 5 months ago i am still new with all this information and trying to find answers many doctors in south Africa has not heard of this syndrome and it makes life difficult cause she does not get the proper care that she needs do you guys perhaps have a booklet that has all the information on how to go about treating or investigating WHS related matters that i can present to them? when i tell them about WHS they look at you as if you don’t know what you talking about because you not medically qualified thanks lot and any info would do

  7. Ashley P. says:

    Hello all, for all you new moms and dads out there, I work with a young lady who has a less severe case of WHS and she is 25 years old! Mentally, it is like she is 5 as she enjoys watching her cartoons and movies and loves anything sparkly and pink and does need a lot of prompting and verbal support, but she is also a lot like any other 25 year old woman…she likes to be showered and have her hair cut and coloured and wears nail polish and jewellery, and to go out for lunch. she can read to a certain extent, can write, knows her numbers and letters and is a very active volunteer member of the community. so dont lose hope if your child has WHS! each diagnoses is unique to the individual and it’s all about learning to help them reach their full potential to the best if their ability :). good luck everyone!

  8. Shameen says:

    Sharon I have a 9yr old who is mainstreamed. 1st, LRE regs point in favor of parents who wannt their child in their neighborhood school. 2nd, the public school district/county needs to prove hands down that that your child cannot meet the requirements set forth in the IEP in the neighborhood school…which is why the 3rd point is critical; you need to devise your IEP in such a way that it calls for mainstream environment. Now in the case of a child already in their neighborhood school but not mainstreamed, only the 3rd point applies. Get a good advocate/lawyer that specializes in inclusive education. This is what I had to do. But it doesn’t stop there…you need to advocate to the teachers and principal ‘how’ inclusion can work…find training opprtys or bring trainers to your school to discuss strategies. Otherwise your child may end up in an environment filled with unmotivated teachers.

  9. Shameen says:

    Tugfah do you have access to facebook by chance? You will get a faster more immediate response there from parents. Also there is a biannual conference where leading genetics and neurologist who study whs come to speak to parents about the latest findings. Finally there is a 2010 or 2012 study on WHS online. Try and google…it is on a notable genetics website.

  10. Francheska cepero says:

    My name is francheska cepero i have an 11 yrs old sister with wolf-hirchhorn syndrome. Shes doing really good but shes unable to walk or talk. Shes very alert and her fine motor skills are really good. I would like to contact people from florida with the same syndrome.

  11. SofiA says:

    Hello, i have a 14 month baby girl with whs. she was born with a cleft lip and palate, pinched nerve in the spine and a medium sized whole in her heart. The cleft lip and spine were successfully repaired before she turned 1yr old. Her next operation is her cleft palate when she reaches 20 lbs. she has seizures and acid reflux too, she takes Keppra and Zantac. She is not a mild nor severe case per the genetecist. I love all of your stories. My daughter may have whs but the joy that she brings to me and my husband is just great. She is our purpose in life and we love her dearly :-)

  12. Brittany says:

    Zachariah will Be 4 this year at birth I was very active with other families but as he grew older, We started having a lot more going on.. Life is finally slowing down some not havin seizures every other day and finally starting to grow with lots of bolus feeds every 3 hours pushing every calorie that we can. Seeing surgeon for hypospadias as well waiting for the date of it this journey hasn’t been easy but sure has been worth it I would love to get in touch with other families who are close to our area.. We are located in ironton ohio, If anyone is close please get in contact with me at bshyian@icloud.com

  13. Bill says:

    5 days ago my granddaughter was born. This WHS was a surprise to us and we are trying to find our way. I was wondering if there is any advice you might give to young parents who have a child with WHS. Is there any equipment you might recommend having at home once they do come home from the hospital? Any help would be awesome.

  14. Tychiecus says:

    I have a 7mouth old daughter that has WHS.She will not drink more then 2oz of milk when she eats she is small for her age,she also has seizures every day.I will love for other parent to contact me I’m in need of any info that will help us on this journey please.

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