Page last updated at 09:49 GMT, Monday, 24 November 2008

Down's syndrome: Your comments

In 1993 my youngest son was born with Downs Syndrome. At the time of birth we were unaware that there were any issues until the morning after he was born. To my horror the hospital gave us the option of going home without him, and I am pleased to say that we never gave that a thought. He is now 14 yrs old, has deferred learning and speech, but is very much a typical teenager. I sometimes think that his older brother who's 21 is harder work... It's not all been plain sailing, we deal with issues as and when they arise and in general cope with everyday life no differently than any other family. I'm extremely proud of both my boys as they both offer something different to this world we live in.
Susanne Bain, Ely, Cambridgeshire

I did not have a child with Down's Syndrome but I tested positive when my mother got tested. She said that I was her daughter and she would love me regardless. Although I was not born with Down's, it was my mother's acceptance of a Down's baby that allowed me to live. I'm very glad that acceptance is playing such a large role in ending terminations, especially since my mother's diagnosis was wrong and if it wasn't for her unconditional love of me, I wouldn't exist.
Janet, Brentwood, United States of America

Having read some of the comments, it is interesting that most of the parents talk about the choice that they had and that few seem to have mentioned the impact that a child with Downs might have on the rest of the family. It was confirmed that our baby had Downs after an amnio test. Although we dearly wanted another child, we also dearly loved our son, aged five at the time, and we did not wish to place a burden on him for caring for a baby with Downs after we had died. It was a decision which we think about constantly and broke our hearts, but I think was the right thing to do.
Anonymous, Gateshead, UK

I had my daughter Freya in December 2006 and didn't know she had Downs Syndrome until she was born, but knowing the love and support of my family I wouldn't change my little girl for the world. She is my little angel and our pride and joy and both my husband and son are extremely proud of Freya's achievements.
Suzanne Fawcett, Connahs Quay, Flintshire

My first child was born in 1991 with Down's Syndrome which was a total shock. I was 25 and nothing throughout my pregnancy indicated towards Downs. My daughter is now the eldest of four and just "one of the girls". Her speech and language are undoubtedly behind her peer group but she now has so many opportunities to participate in "normal" activities both within and outside her school. She has just passed her GCSE art and is now going on to further her love of art at college and in 2010 will be going to a residential college to prepare her for her working life. She is a happy and fulfilled child whose outlook on life is fantastic. Nothing has ever held her back and each achievement throughout her life so far has been extra special to myself and the rest of the family
Joanna Bowman, Redhill England

I am disappointed to see that the BBC did not use person first language in this article. These children are NOT "Down's syndrome babies" but instead babies with Down's syndrome.
Maria, Brookline, USA

In 1997 my wife and I were expecting our first baby and blood tests suggested a risk of Down's. We talked over the options with a surgeon who tried to persuade us to have further intrusive tests. We were shocked when, in discussing the risks of having a baby with Down's syndrome, he said they were managing to 'screen out' an increasing proportion of babies with Down's. Our baby did not have Down's syndrome but I will never forget that surgeon and his opinion of people with that condition.
Alan, Dundee, Scotland

My son Luke has downs syndrome, and is now three and half years old. He has had many operations in his young life, but this has only served as a catalyst for us as parents to ensure he leads a normal as possible life. We have had to fight diligently to ensure he receives what he is entitled to. We are very proud parents and love him no less.
Neil Hemmings, Teignmouth united kingdom

Our daughter is 24 and is severely disabled compared to many others with Down's Syndrome. Her life has enhanced our lives and introduced us to many wonderful people. She lives away from home now in a lovely house with four other young women who are more able than her. This move was not necessitated by any crisis in our ability to continue to care for her, but rather her right to leave home and have her own life, in the same way that her siblings will.
Mrs. Hilary Parry, Croydon

Our son Isaac is almost 16 months old neither his heart condition or the fact he has Downs was diagnosed until after he was born. We have had fantastic support from friends, family and health professionals. We have joined the Downs Syndrome Association and attend local events. Isaac is the fourth child in our family and has a wonderful relationship with all his siblings. His condition certainly doesn't change our minds about prenatal testing, any child can develop a whole host of problems at any time in their life and just because some children carry the label Downs Syndrome this should make no difference to what we can offer them. A wider world has been opened up to us and for this we will be eternally grateful.
Ann-Marie & Nigel Sheard, Ackworth, West Yorkshire

Claudia was born with Down's syndrome in 1983. We can't begin to tell you what joy, pleasure and love she has brought into our lives. Everyone who meets her falls under her spell. We are so delighted to learn that more parents are choosing to keep their Down's children. We promise you will never regret your choice.
Roger Key, Middlewich, Cheshire

I have a daughter with Down syndrome, Katie, who was born 11 years ago. She can read, write, add up, play recorder, plays chess and can deliver a mean check mate! She attacks everything she does with loads of enthusiasm and is very caring. She brings out love in other people and in this world which is in many ways lacking in love, this is her greatest gift. Yes, keep your child with Down syndrome, love them, and they will return it all to you tenfold.
Colette Lloyd, Oxfordshire

I'm 18 and have an 11 year old sister who has downs. She likes the same kind of things as other kids, football, dancing, singing along to her Mama Mia CD...badly!, drawing, and stealing my makeup. It frustrates me how she can manipulate mum and dad into thinking she's a fragile little flower then grins at me (behind their back). Still life can never be dull with our Kaitlin around. Last week she was at the Cedar Court Hotel in Bradford being presented with a trophy for young female footballer of the year- she's now got more trophies than me so I'm going to have to pull my socks up!! The only thing that limits our Kaitlin is the low expectations placed on her by people blinded by the Downs label. I think she's ok and pretty cool for a younger sister, but don't tell her that she's big headed enough as it is...
Keldene Mcnulty, Steeton, West Yorkshire

We adopted our daughter at 6 months. She has Down Syndrome, and is now nearly 18. She is a delight! Her birth mum did not feel that she could manage her, so we gained her instead. We have never had the slightest regret about that decision. People with Down Syndrome are, in many ways, like all other people - they have a range of abilities from very capable to far more dependent. Some have added physical disabilities, or additional learning disabilities. Our daughter has little spoken language and will always be dependent for care on adults. But she gives us joy every day of her life.
Paul Salter, Middlesbrough, UK

I have a daughter with Down's Syndrome who has recently turned 13. Her birth was a complete shock to us but at no point would I have wished for her to be anything other than the joyful and beautiful person that she is. If we had followed the suggestion of a health professional shortly after her birth and given her up for adoption, then our lives would not have been enriched in ways that words cannot convey.
Mary Hayward, Devon U.K

As a Girl Guide leader I persuaded the mother of a girl with Down's to let her join our unit as she was not at school in our village and therefore had few local friends. She joined and had a wonderful time and the other girls in the unit gained hugely from her membership - it was their first and probably only experience of Down's syndrome. Our Guide unit did a great deal of outdoor activities which she joined in on. When she left us to go to College I was very pleased that she was able to take part in the Ten Tors Jubilee Challenge. She did it three times and gained Bronze, Silver and Gold medals - one of the few former guides from our unit with a full set of medals!!
O Barnes, Bristol, UK

It doesn't help when the BBC use the term "Down's babies" as if they are some sub-species. Please sort your language out once and for all across all your editorials - a child with Down Syndrome - no apostrophe (not a Down's child)
Emyr Williams, Chelmsford, Essex

My daughter has down syndrome but we actually don't see it. The early intervention helps to make sure you have the right therapist to perform evaluations as to what to do in areas where your child is lacking. DS is also something the government needs to educate people more about. The notion of a worker at the local supermarket is to me another form of racism as not all DS sufferers work at local supermarket. They work in offices, have a profession, are bright students and members of the society. They are directors, managers etc so to think they are or will end up in local supermarket is just simply dumb.
Myles, London, UK

It was a huge shock to discover my new baby had Down Syndrome, but he is a lovely boy who brings joy to all who know him. Things have changed a lot for people with Down Syndrome in the last decade, the most significant change has been in people's attitudes. It really feels like my son has good prospects and every hope of a largely independent life. There are plenty of "normal" people who are incapable of looking after themselves!
Miriam Wood, Farnborough, Hants

My daughter, Katherine was born in 1988 with Down's Syndrome. Heartbreakingly, she developed leukaemia when she was one and after 20 months of treatment she died. That short period was one of the most precious, joyous, rewarding and shattering times in my life. The support I received from family, friends, strangers and professionals was truly loving and amazing. Her impact still shines on people who were lucky enough to have known her. In hindsight if I had tested positive at 12 weeks, I would have continued with the pregnancy. Her life was short but very happy and extremely meaningful. She was a child of the universe with the right to be here even if it was just for a short time.
Marie Ross, Melbourne Australia

My Wife and I were advised to have a Down's test with our 10 week old son Billy. However we didn't want to put ourselves under any further pressure as we knew (after having five miscarriages) that we wanted our son no matter what after having five miscarriages. I am a teacher and we have four Down's students integrated into our school who have great quality of life. I also think that the numbers are rising because woman are giving birth later on into their late 30's and early 40's.
Andrew Clarke, Warrington/UK

When my grandparents had a Down's baby, they were told to put her into a home, and forget they ever had her. She'd be dead within fifteen years. They refused. They fought hard for her right to have a full, happy and productive life. They were fearless campaigners on her behalf. My aunt had that chance. She learned how to manage money, catch a bus, hold down a job. She needed gentle assistance, but don't we all. She was a joy to be with, and she knew how to party! We should never forget the brave parents who helped bring acceptance for their children, who changed the attitude of the medical profession and society, and who did it with little support and no money, in just 60 years. It's amazing what you can do with love.
Rachel, London

I would not be without our little boy, he brings joy to us all. He is an inspiration and will have a go at everything. I am pleased that new parents of children with Down's are looking much more positively.
Jackie Till, Cannock, Staffordshire

Matthew will be 21 in January, he has helped to arrange the party at the golf club at which he is a member. He prepared the guest list, wrote the invites and has a play list for the DJ. When he was born we were devastated, a baby with Downs Syndrome was something that happened to somebody else. We never thought it could happen to us. Matthew has been included in main stream education and is now at college improving his life skills. We feel proud when he goes out to catch the bus in the morning on his own. Matthew is a great young man who shares an uncertain future along with the rest of us. We are confident that he will cope better than some without a disability.
Chris Gorton, Urmston, Manchester

I was told my daughter had Downs when I was about 12 weeks pregnant and every doctor, gynaecologist I saw tried to convince me a termination was the best option. I was still offered this at 26 weeks! One reason given to me by a cold hearted consultant was that "these babies put a strain on the NHS". My daughter was stillborn and when pregnant again, I refused all tests apart from a scan. It's not society who are looking for the "perfect baby", its the medical profession.
Heather, Livingston, Scotland

I am carrying a child now whom the nuchal scan shows has a higher than normal probability of having Down syndrome. I was not worried about me or my husband and our ability to cope, but I was worried about my child's future as an adult -- life span, future work, ability to care for themselves. But then I thought of the people with Down's I knew growing up. I got assistance at our local shop from the junior manager's assistant, who is an adult woman with Down's, who chatted about her weekend parties and what she was going to buy her mum for her birthday, and I stopped worrying. It's challenging for everyone in a family if a child has Down's - but so what? It would be a challenge if the child were blind, or deaf, or had a cleft palette or a club foot. It's life. You deal with it.
Kerris, Reading, Berkshire

People really should get used to the idea of naming people who have down syndrome as 'a person who has down syndrome' and NOT a 'down syndrome person' - they are people first and should not be called according to the condition they have, this is prejudice. We chose to adopt a baby with down syndrome 13 years ago - one of the best things we have ever done.
Joy Lucas, Saddleworth

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