| 106 | | 
Name: | jamie boyer
(jamieboyer@btinternet.com)
| | Date: | Wed 25 Aug 2010 17:37:37 BST | | Subject: | isla | | | hi my daughter isla is 8 on friday and is really well at the minute ,she goes to main stream nursery and special school which she loves . Isla has been dancing for 2 years and this has helped with her strenth and confidence no end she remains very small and light at 100cm and 11kg but since her heart surgery last year she has grown 6cm so we are very excited . Isla still doesnt speak but signs over 50 words and always makes her self understood she also still totally relys on her gastrostomy feeds for all of her nutrition although she does like yoghurt. Her fits are few and far between and is free from meds .Isla is avery happy easy going little girl which just goes to show children with whs isnt all doom and gloom .good luck to u all and stay happy big kisses from isla see u all at the next meeting xx | | | | | |
| 105 | |
Name: | Sam Robinson
(Samrobbo1983@aol.com)
| | Date: | Sun 25 Apr 2010 15:37:59 BST | | Subject: | Brenden Robinson | | | Hi I have not written in a while. Brenden is 9 years old and is doing really well. When brenden was born I was only 17 and we found out brenden had wolf hirchhorn when he was 6 weeks old we were upset at the beginning because we had never heard of the syndrome and for me the hardest thing was not the disability itself as I was determined to do all I can to help him, but it was the thought of brenden having fits that scared me. Brenden had his first fit at 14 months old which was scary and he was in hospital for a week the first time. He is on valoporate sodium (epilem) he has 6mls twice a day, but touch wood brenden has not had a fit for 2 years but thankfully he only seems to have them when he has an illness. Brenden eats very well and at school he has seconds I am surprised his school have not charged double dinner money lol. Brenden's drinking had always been a problem though until recently brenden has never really drank well especially on hot days he would not drink at one point he had a nasal tube for fluids but he kept pulling the tube out so the hospital decided to try putting extra water In his food. Then he went to the dietician who prescribed him with paedasure which is a medical drink and also a food suppliment. Brenden's school started giving brenden a drink by spoon and bowl which is working and now he drinks like that at home and he is now drinking loads the only downside is he will only drink paedasure nothing else and as it is also a food suppliment and he eats well he is getting quite a belly lol. Brenden in November last year took his first steps and now walks a few steps at a time which I am really proud of when he first done it we picked him up and was running round the house with him cheering and the more we cheer him on the more he does it bless him. Brenden can also swim without armbands a little bit he is so cute when he swims. Brenden cannot talk yet but he an hum songs he has heard and he just loves music, brenden prefers to get around by crawling. Brenden loves cars and busses when he seems them drive past and he also loves te grand prix so we tape that for him to watch and he crawls to his chair and climbs in his chair to watch it. Brenden can clap his hands when asked to and he also will give u five when asked. Brenden often walks to the shop with me holding my hand only and he walks so well but he is not very good at queuing to pay,he gets a bit impatient. Brenden loves things that spin and often watches the washing machine and makes his round toys spin. Brenden recenly got a new bed which is a giant cot with a remote to go up and down but he often wakes in the night so he can get in our bed then he goes back to sleep. Brenden can sometimes have a bad temper and will often hit you if he is really angry but most of the time he is a very happy child and often has a smile on his face and he loves going to school. Brenden is a little character and we are the proudest parents ever I honestly would not change brenden for the world. I think brenden having wolf hirschhorn has made he look at things more clearly for example walking I took for granted but now I think that it is more precious when you see how hard he has worked to get to that step. Brenden is the best thing that has ever happened to us and we could not be more proud. | | | | | |
| 104 | |
Name: | Laura J McCormick
(l.j.mccormick@hotmail.com)
| | Date: | Mon 19 Apr 2010 19:09:56 BST | | Subject: | Daniel's Sister | | | Hi, I am Daniel McCormick's sister. I am 23 years old and would be happy to be contacted reguarding this condition. My little brother is great but I know he is one of the better individuals with this condition. Miss him now I live away from home as he won't go on the phone. He's happy though so can't complain. | | | | | |
| 103 | |
Name: | Margaret mccormick
(maggiewill@hotmail.co.uk)
| | Date: | Tue 13 Apr 2010 19:18:03 BST | | Subject: | Daniel mccormick | | | Hi i am the mum of Daniel he is 19 years old and he is going to a college for adults who need full time care he loves it.He stays there in college terms and comes home in hols.Daniel needs care with all his needs he wears hearing aids cant speak but can let you no what he wants. He can walk about is small for his age 9 to 10 years old.He has a hole in his heart and valve closeing but up to now not causeing any problems. He takes epilim because started having fits again,after not having any for about 10years.So he had a break from the medicine.Has not had one since he has been on it again. Only thing he keeps getting high temp when he is unwell.Have him home at the moment so will have to go and get him ready for bed. Thanks Margaret | | | | | |
| 102 | |
Name: | Wendy James
(wendos@orange.net)
| | Date: | Mon 29 Mar 2010 19:27:09 BST | | Subject: | Hello, Feeding and Cramp problems and anyone in the Notts area | | | Hi
My daughter, Charlotte, is 27 and has WHS 4p-, which was diagnosed when she was 8. Charlotte is in very good health in general after lots of problems in earlier years i.e. cleft soft palate, epilepsy, single atrium, poor growth, glue ears. Charlotte has been off medication for some years but is now starting with a couple of problems. What seems to be cramp, which is becoming more prolonged (she has w sat for years and this probably hasn't helped. She also doesn't bite or chew her food and is starting to 'gag' a little at some meal times and is quite sick at times (although in good health). Has anyone experienced this, we wonder if it is reflux. Charlotte loves her food so this is making mealtimes unpleasant for her.
Lastly, does anyone live in the Nottinghamshire area (we are in Mansfield) and would you like to meet up. It has been a few years since I have met other families with WHS members and would love to rectify this now that life has settled down again for us.
Hope to hear from someone soon. Just want to add that Charlotte is a delight to us and has astounded us with what she has overcome and the subsequent joy she brings to all who knows her.
Wendy | | | | | |
| 101 | |
Name: | Lisa
(cl.palin@virgin.net)
| | Date: | Mon 08 Mar 2010 12:27:11 GMT | | Subject: | Behaviour/ADHD/Medication | | | Hi, I would like to ask if anyone has experience of Ritalin. My son, Miles (13) has been assessed for ADHD and his psychiatrist would like to try him on it. He is already taking Respiradal for anxiety based behaviours (very repetitive behaviour, easily anxious and stressed) which has been a great help but he still can't sit still for more than a couple of minutes and flits from one thing to another. This makes occupying him very difficult. Any experiences and thoughts would be welcome. Lisa | | | | | |
| 100 | |
Name: | Palua Pierre-Madigan
(pierre-madigan@ntlworld.com)
| | Date: | Sun 28 Feb 2010 23:04:39 GMT | | Subject: | Lost Touch | | | Hi trying to contact Shelley from Manchester daughter Bethany think i saw your name on just giving page. Contact numbers i had dont woke hope all is well. Get in touch my numbers have not changed. Paula, John and Jemiah | | | | | |
| 99 | |
Name: | Susan Cooper
(enquiries@whs4pminus.co.uk)
| | Date: | Sun 14 Feb 2010 20:53:57 GMT | | Subject: | Damien's post | | | Hi Everyone, Further to Damien's post I think pulling together items from the messageboard into downloadable documents would be useful. In answer to his question - what would it take to do this?... Well, I can go through the board and start putting people's entries onto seperate documents depending on what they are about. These could then be added onto the site so you could click a link and download the relevant messages. This would obviously take some time but if you feel it would be useful I am happy to add it to my to do list. I go on maternity leave at Easter so then would be the best time for me to get going on it! Please email me and let me know what you think! The Committee has discussed upgrading the board to have threads for individual topics. It is something we continue to discuss as cost is an issue. However, I think Damien's idea may be an interim solution. I hope you are all well - Suze x x x | | | | | |
| 98 | |
Name: | Damien Douglas
(damiendouglas666@hotmail.com)
| | Date: | Fri 12 Feb 2010 00:12:30 GMT | | Subject: | hi | | | I have been reading through the guestbook and seeing the queries being raised there. Some are new and others are similar to those that have come up before. Would it be useful to have a list of those questions, e.g. feeding difficulties, seizures, mobility aids etc that parents could link into without wading through the whole guestbook? What would be required to set something like that up?
Can I also ask if anyone has notes from, or the text of the talk given at the National Meeting last May where it was suggested that we organise a series of tests for our children on a regular basis. These tests if I remember rightly included kidney function tests and tests for bone density. Were there other tests suggested?
Una and Ailis are nearly 15 now.They are still the only set of identical twins that we know of with WHS. Thankfully they are doing well health wise. Though they have not had seizures in a long time, both are now doing a lot of eye rolling up into the head and rapid flickering. Might this be a possible form of epilepsy again? Any thoughts about this would be welcome.
Regards, Damien and Mary. | | | | | |
| 97 | |
Name: | Wendy
(wwpba@verizon.net)
| | Date: | Mon 01 Feb 2010 12:34:25 GMT | | Subject: | Our son Bryce | | | We live in Pennsylvania with our 3 children.Our middle son Bryce is 13 years old was diganosed with Wolf-Hirschhorn at the age of 2. He was diganosed with at mass in his abdomen. I have found one type of disease that goes with Wolf-Hirschhorn but was wondering if other children have developed this mass and what it turned out to be. Also if there are other rare disease's that other children developed. We are going for a CT scan to have futher information of what will have to be done. I just want as much infomation on me so I can ask lots of questions and inform them what I discovered. This is not a very common or much knowm about syndrome where we live. All of your help would be greatly appreciated. Thank you and God Bless. Wendy | | | | | |
| 96 | |
Name: | John Pierre-Madigan
(pierre-madigan@ntlworld.com)
| | Date: | Fri 22 Jan 2010 07:52:22 GMT | | Subject: | London Marathon | | | Hi Everyone
My Daughter Jemiah is five and has the Wolf Hirschhorne Syndrome. We have attended the conferences on the last three occassions and would recommend this to anyone out there who has yet to do so. They are great for means of support, advice and guidence.
To support the Wolf Hirschhorne Syndrome trust, I will be running the London Marathon on April 25th and hoping to raise as much money as possible for this fantastic organisation. Please support me in my endevours and visit my page on http://www.justgiving.com/John-Pierre-Madigan.
Jemiah had a very difficult year in 2009, on life support twice and we came very close to losing her. However, she bounced back and is stronger and happier than ever. She makes me and mum smile every day and we are blessed to have her in our lives. Whenever i am feeling worried, down or a little stresses i just get a cuddle of my little girl and all these just float away.
To put the Marathon in to context,I started training 9 weeks ago. Prior to this i did no excercise of any description and could not run 1/4 of a mile. Now i am up to half marathon distance non stop running. I hope to be able to complete the whole 26 miles without walking a single step, and also do this within about 4 1/2 hours.
Wish me luck!
John | | | | | |
| 95 | |
Name: | samm cookson
(williamriches@viginmedia.com)
| | Date: | Mon 18 Jan 2010 18:31:36 GMT | | Subject: | Meeting new people | | | Hi there ,my name is Samm.My partner Will and I have 3 children,our youngest Talia was 2 yesterday.talia was diagnosed with WHS in April last year,but the run up to christmas was hard for us as we spent 4 weeks in hospital due to her having fits,on our second week there Talia was diagnosed with Frontal lobe seizures...At times i feel very alone,even tho i have great friends and a wonderful family support network. Will and I no none else in our situation,and i would love to make friends with people even on the net and from from other countries ....
Samm | | | | | |
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