I saw a small bit in a TV mag, but does anyone have more info on it like how many epesodes it is and any thing else.Also, has anyone got any links to videos of the last cuple of EP's for a reminder?
As a parent of one of the children followed I can let you know that there are two programmes on the 13th and 20th of Sept. This is in my opinion the best of the series so far and follows the children through their sixth and seventh years. I don't know of any link to watch the old episodes but they do remind you of events in previous series. Please watch and let as many people as you can know. We signed up to the programme so as to try and enlighten people to the joys and problems associated with having a child who is disabled and to try and dispel some of the myths that you just get everything given to you - believe you me you have to fight for most basic of things!!
I have been following this wonderful program since it started, I lost my daughter to the same condition as Shelbie, although we did in fact have the CVS as Williams parents, and the results didn't go in our favour. I must admit I cried when you got your good news as I always wished that could have been us. I hope your family are doing well and William is okay? And your baby ( has she been born yet? ) came into the world safely.
hi willams dad you said it it is so true you have to fight for everythink for these special chirdren i have a son with trisomy 9p and been fighting for 16 years and still fighting
My 8 month old daughter was diagnosed with TS in April. We're still trying to get our heads around everything that comes with it. Well done on doing the tv programme, we'd never heard of TS until Laoise (pronounced leesha) was diagnosed with it. Hope William is doing well. All the best. Jim
Hi Everyone, Thank you for watching and for all your lovely comments. To Laoise's Dad have you contacted the Tuberous Sclerosis Association they are a wonderful bunch of people with huge experience. Most of them have family affected by TSC and fully understand what you are going through.
Smoochies Mum, Jessica is thankfully healthy and you will get to see her next week on the second programme. We are so lucky to have them both.
hi williams dad. watched the tv programme , was lovely catching up with the children involved ...... my son conar was diagnosed with t.s.complex in nov 2004 after having partial complex epilespy . and alot of sleep problems ,,, and behavioural, ,, im glad you let your child be shown , as it was through your experiences with william and william himself that i found out what was wrong with my son the first time the show was shown on channel 4 ,, and i really want to thankyou as a family for helping us and conar here, as no one heard of T.S.COMPLEX and they still dont ,,,,,, especially schools and the differeculties they go through , we still fighting its been 3 years so far conar not had full time education yet and his 8 in october ,,, well, all i can say is , a big thankyou , ,,,,,,,,,, i b watching next week 20th sept ,, all the best to you and your wife and your two beautiful children , please stay in touch, its hard finding familys who have the same condition as ours ,and i know what your going through , although youve been through alot ,,,spk soon takecare x
sorry just another note ,,,, i want to thank channel 4 for making these programmes as it hopefully educates society on these conditions , and helps other familys who are going through similar things x
Thanks for that. The main reason we did the programme at the start was to try and help people in our situation to understand and cope with what was going on. As I said to a previous poster, have you contacted the TS Association. They have specialist advisors that can help you to get local people and services to understand what you actually need and help to inform schools etc what they will need to do to cope with our children. If you search on the net under 'tuberous sclerosis association' you will find them easily. They really can make a difference.
Hi everyone on the forum. I don't have any children yet, and don't have any experience of disability in my life. I just joined the forum, as I thought the programme was so well made/touching and interesting. Someone asked about Emily's story earlier on- it was adorable when she was explaining to her classmates why the cameras were filming at her school. Hopefully there will be more about her progress next week.
Does anyone know of any schemes whereby you can volunteer with disabled children.
Congratulations on the birth of your daughter william's dad!
I would like to share my thoughts. I have arthrogryposis like Zoe, I'm 46 and have two great kids of my own. I was so moved by her story last week because it brought a lot back to me which you always try to shut away. I was most moved by what her mum was going through - I've been a single Mum myself and know how hard it is normally. I too remember the fear of the plaster saw! It seems so daft now because we all know it doesn't hurt but it's the noise that she will remember from the last time she was in hospital, think what you feel like when you hear the dentists drill. I also understand the worries she has about Zoe going in a wheelchair, I walk using artificial legs but use a wheelchair from time to time now especially for long distances. I expect nowadays few doctors would recommend amputation like I had at the age of 7 but it has enabled me to live a near normal life, going to mainstream school, university, work and have children of my own. Today neither of my parents are alive but I owe so much to them I felt I had to join the forum to let everyone know just how great the parents are not just the kids!
Hi....I was wondering if any one has any information on the hospital that Zoe went too....or any other useful information. My niece has arthrogryposis......so I enjoyed watching Zoe's story, and how well the operations have worked...though there is concern over her left foot now which I hope doesn't turn out to be too serious. Also...I enjoyed reading 'SixtiesChild's comment...its so nice to see you have done so much with your life....you are a real inspiration!
There is a support group for families with children born with Arthrogryposis called TAG you can get details online at: www.tagonline.org.uk
Good luck to your family and neice, she will go far with all your support. Just remember she may have different challenges but underneath she is no different to any other child.
Hi sixtieschild. Thank you for the link. I'll be sure to check it out. You are right there....she is the same as every other child...very mischevious lol. She is so amazing though...the way she has learnt to do things diffently always makes me proud of her...she is so special...always happy and full of giggles and she never gives up on anything. She always puts a smile on my face aswell. She is 2...but full of energy for her age!! Thanks again for the link!! I'm going to take a look at it now!
Hi All, I would just like to say how wonderful the program was.All the children that appeared looked so happy and is probably why i cried all the way through it.I must say how strong you all are.
Williams dad, My daughter also suffers from TSC and has done since she was 3 months.She went through brain surgery last year but everything that could go wrong went wrong and so tubers were not removed.Post op,Jennifer(my daughter) could not walk and things got really tough 24/7. William looks so happy and to have a new baby sister is great,congratulations!!!! I must say i wished to have more children but the condition holds me back. I must say how brave you were to take that on,if only i had enough guts. I have been in touch with the TSA and must also say what a great lot of people they are there.
I hope you are all well and i will be watching on thursday. Take Care and love to all the families.
I am zoe's mum and would like to say thank you to all who have watched and supported us through the series. I would also like to let $u$!£ know that zoe is under Hammersmith hospital's muscular dystrophy team, but has had her operations at St Mary's hospital in Paddington.
Thank you for letting me know about what hospital Zoe goes too. I really appreciate that. How is Zoe doing? I can't wait to watch tomorrows document....I hate having to wait a week though to see the next one cos I'm so eager to see how everyone is doing on it!!! Anyway once again, thanks for the reply!
