hi im looking to set up a charity for my daughter just to raise awareness for such a special syndrom, i dont think its very fair that alot of other syndromes are well known about but this very special syndrome is left in the dark. Ive not long lost my daughter she was pretty healthy they only problems she had was fits due to high temp. the doctors didnt really know alot about the syndrome and they let her down. had they known more about the syndrome then maybe the out come wouldnt have left our family so heart broken. which makes me realy angery. my princess was just 17 months. any one with any information please could you let me know.im in the u.k and i just want whs more known about so familys dont have to feel the pain and hurt we are. thanks. xx
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Hi Shelly. No words can tell you how we, or anyone else for that matter, feel for you and your family. I am so happy that you are involved and want to do something about it. It is on my mind to start holding fund raising events and I get stuck when I think about what to do with the money that is raised. Can you tell me, either in this posting thread or over email (admin@wolfhirschhorn.org) what happened exactly with your child? I know it is painful, but we want to help as much as we can.
To be honest i dont no were to start my princess went in on 5th/01/10 with a fit they gave her 4 lots of diazipam then alot of larazipam and finaly ketimine. she finaly stoped fitting after an hour and 40mins. she was taking to intensice care and was there for a week. Her windpipe was enlarged and she was having problems breathing with out the life surport. when they took her off the life surport she was having jittery movements which i was told was withdrawing. But i didnt think it was, to me it was more like a fit. She was then moved down to the childrens ward, the doctors told us she had a chest infection but after 4 days of antibiotics she didnt seem any better if anything she was getting worse her breathing was really had the sats machine was going off all the time they were just saying it wasnt a good trace. so myself and my husband had, had enough and asked for a chest xray to be done, but the doctor told us he didnt feel a need for this to be carried out and that he thinks she has another infection but didnt know what it was. i had other doctors tell me they dont really know alot about her syndrome and its a case of trying things out and seeing how things go. I then asked if my daughter could be moved to a hospital that doctors know about her syndrome (great ormond street hospital in london u.k) That was a no. so after a few more days she got worse and worse. with in 12 hours she had gone from a normal childrens ward back to intensive care. they done the chest xray and found her lung had collapsed were she had pneumonia so bad and that her heart had moved over. she carryed on fighting for 5 days after, then she got worse the nurse told me her liver was inflamed. then the doctors told us there was nothing more they could do and did we want to leave her on the life surport or hold her while she went to sleep. but as she did go to sleep she went yellow. so that tells me she had liver failer. im taking these doctors to court. i feel they let my princess down and had they known more about this special syndrome and how to treat my girl then just maybe things couldnt be like they are today. I just feel i have had so a special gem taken away from me and that more should be done so people are as blind to this. there was alot more that happend in the 3 weeks we were in hospital with our princess but that is the story broken down. I just need to find the right place for the money i raise to go to. i want to set up a main charity rather than fundraising if you know what i mean. thanks kevin to take the time to reply means alot.
Shelly,
My gosh. I don’t even know what to say. This hits home to us because Kendall is in the hospital right now with pneumonia and has been on all kinds of drugs and breathing treatments the past 5 days. She seems to be getting better, but she is still very lethargic.
Well, after reading your story, I am going to talk my interests in this area much more serious. I have the network and reach to get something like this in place. I know that we are an ocean apart, but maybe we can work together and find a way to make this work for everyone.
I am so sorry for you and your family…
What was your girl’s name?
yeh that would be great if we could work together i dont even know were to start. i hope kendall gets well soon, with my princess they didnt know she had it untill her lung had collapsed, i dont think it was just this tho as she had side affect to other drugs she was on but i didnt know about it untill i done my own reshearch when i came home.
Chardelle is my princesses name and such a little fighter untill they let her down. i would be very greatful if we could get something up and running, here in the u.k so many people and doctors are blind to such a very special syndrome and i dont think its fair on the children and the parents.
give my love to kendall and the both of you.
Dear Shelly,
Thank you so much for sharing the details with us. What you are describing has happened about six times to us in the past year. Amelia started with seizures that lasted about two hours and the ER had a hard time getting them to stop. One of the hospitals couldn’t get them to stop at all and she had to be airlifted out to another one. One time a different hospital wanted her to stay but I insisted she be transfered. But we can do that in the US because we have private insurance…and that was there first question to me when I asked for a transfer…What insurance do you have? I can’t imagine if I had to stay at a hospital that knew nothing about her syndrome.
One thing I would like to do is get new information published about the syndrome. I think all of the statisitcs are wrong about the syndrome that doctors are given. I am asking some of my specialists that I am close with how to go about changing this. I will let you know what I find out! Chrissy Rivera
hi chrissy thanks for the reply. Thats the major problem we have here in the U.K with this special syndrome they are giving the wrong information out, they dont know about the syndrome only what they are reading from a text book which is probly about 20 years old. i did ask for my daughter to be transfered on more than one occasion but they just keept refusing. I didnt like there replys to the questions we were asking, 99% of the answers we were getting were they dont know. i totaly blame the hospital for our heartache and we are taking them all they way, so they know they cant get away with it with other children. i just feel the information the doctors are giving out is wrong and that they are lacking knowledge about the syndrome, and also the way they are taking parents hopes away telling them there child wont do things before its even happend, but yet you read on here and most of the children are doing things but in there own time. I just feel the syndrome needs more aweaness and up to date information.
My aim is to do this and maybe have a few real life stories so new parents to syndrome can see for there selfs its not always black and white like the doctors tell it. thanks for taking the time to reply means alot and any information you can get hold of would be great. thanks again. and i wish you all the best with Amelia x
I feel the information in the uk is very outdated. On our visits to hospitals the doctors go and sit around the corner and google whs. That is how much they know. A new family diagnosed pre birth very recently was advised to terminate at 34 weeks as they said their child would not live past 24 hours. They refused and he is now 5 months old. I feel for all of us and what our families do endure at times. I cant tell you enough Shelly how sorry I am for your loss xx
I would like to say that this story touched my heart I am not a parent but my niece also has Wolf-Hirschhorn Syndrome I currently wear a bracelet with that to try and bring awareness to it. My niece was born with a cleft pallet also and has had many surgeries. She has to be on a feeding tube and it breaks my heart all that she goes through. But I would like to honor all parents that have special needs children I know it’s hard at times but know that you are not alone and that I would also like to help in any way possible because this is something that I would like others to know about. Thank you