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.
I stumbled onto this site this evening and I was so thrilled! I’ve not been able to look at the entire site yet, but will be back. When my daughter was diagnosed (finally) at 6 months, in 1986, there were only 60 some odd known cases in the world. I can’t tell you the brick walls I ran into, but have learned so much; it would have been nice if there were others back then, to have a little moral support, but how nice to run into others who know and understand what we went through! I actually spoke at the National Genetics Convention, in Charlotte, NC in 1987 or 1988 after Megan’s 1 year check up and told the head of the genetics department how they needed to change their practice of diagnosing and dumping this horrible prognosis, but giving the parents no direction or ideas of where to start to help their child…as a nurse, I know it’s much different now, but at the time, they told me, “she won’t live past 2, and if by some miracle she does, she’ll never walk, never talk, be unaware of her surroundings; she’ll basically be a vegetable.” At the time, they recommended I put her in an institution. I told them she was my child and belonged at home with me, just like her brother. Megan is now 25, loves her brother, sisters, dogs, music, books and food! She was one of my bridesmaids at my wedding a year ago (with a little help from her sisters) and is a very happy young lady and has taught me more than I could ever imagine about love, life, priorities, forgiveness and so much more!
I can’t wait to look at the rest of your site!
Lori Tomer
What a great introduction to the site and to new parents! Whenever I visit, I am always left inspired! Great Job!
just came across this website…so wonderful to find…My son Bryce is 15 diagnosed at 2 years old..born at 33 weeks…numerous health issues…he can’t walk or talk…he is tube feed at night…eats pureéd food by mouth….We recently developed low blood sugar and could not find if this was related to syndrome or if other children have had this issue and if anyone knows what causes it…thank you again for this wonderful site…will definitely stay contacted with others”’Wendy
My son, who does NOT have WHS also had low blood sugar when he was that age and out grew it. I think it must be a hormonal thing. We would test his blood sugar with a glucometer (his older sister is diabetic). Eating a CARB would help before he went to bed. And we also noticed that for some reason, it happened more around the holidays > maybe stress related? Eventually, like I said, he out grew it and is now 26 years old and hasn’t had an episode in 6 years. Hope this helps.