Kylie is 17 and she has an older sister called Carlene who is 20 and me, Arlene and my husband, Peter.

Kylie was diagnosed shortly after birth. When she was born she had very swollen feet and no toe nails, so we knew more or less instantly that there was something wrong and they asked to do some tests and it was about 24 hours later that they came back and confirmed that they were 99% sure she had Turner's Syndrome.

I had never heard of Turner's Syndrome and I think my first reaction was, would she be mentally retarded, because we always associate a syndrome or anything else with Downs Syndrome. So I was told that she might have some learning difficulties but most girls with Turner's Syndrome have a normal IQ and that she would be short and that she would need growth hormone injections, that she wouldn't go into puberty and that she wouldn't be able to have any children. What they didn't tell me was that she would receive estrogen treatment, therefore she would go through puberty and that she would be able to have either egg donation or adopt and I think that's the only thing that disappointed me about the diagnosis - they gave me all of the problems and none of the solutions when in actual fact there are quite a lot of solutions around. But we were reeling from the shock because I think it's particularly difficult if you yourself have just had a baby and you've got all your hormones and things then for me the main problem was to learn that she was infertile, the rest I felt I could deal with but that one was difficult and if I'm truthful that's still the difficulty - for me, but... and none of the other problems have been as severe as I envisaged, not bad at all.

What happened was, we were told about 6:30 pm and visiting time was at 7:00 pm so Peter and I had only had twenty minutes to talk to each other before all these visitors were to arrive. So we had to make a decision, should we tell them or should we find out more information, so we did tell our family - that was my father and Peter's mother. And my dad said, 'she's here now and all she needs to be is to be loved', and that was very much what I needed to hear. Unfortunately Peter's mother said, 'there's never been anything like that in our family', and that's not what I wanted to hear. And that was difficult and that just shows you the different personalities, different reactions and everything. And other than my sister, and my best friend Lee... we didn't tell anybody else until we ourselves had come to terms with the condition and tried to find out something about it, which was not an easy task because there was an awful lot of misinformation and what happened was my mother-in-law worked for a GP show she asked there, and out of eight G.P.s only one had heard of Turner's Syndrome and he told her that Kylie would be a mentally handicapped dwarf and that was an unfortunate statement to make which might be why my mother-in-law doesn't speak to us and hasn't seen Kylie since she was a year old. So that's just different people's reactions. Fortunately I got the facts from the doctors that were treating Kylie and I think I went through a period of not sure what to do, should you tell, or should you not, so you've got to consider what's right for Kylie and the fact that she was infertile made me think, well that's really her business and if I tell people then her private medical information is then public knowledge. I'm a very open and honest person and I suppose I talk about my problems and I think that's a way that I deal with it so I had wanted to deal with this in the same way but wasn't quite sure what to do. And interestingly what happened was a small group of friends knew about Kylie and the others didn't. And at her christening I kind of watched everybody and I tried to work out if the ones that knew picked her up more often than the ones that didn't and actually when I stood and observed people I recognised that nobody treated her any differently, and it made no difference and I wasn't ashamed of the fact that Kylie had Turner's Syndrome and I just decided that I wasn't prepared to hide something or pretend that it wasn't there and I told people and the reaction I got from people was wonderful and really my friends at Toddler Group they all said, 'why did you go through that on your own? We're your friends, we would have supported you' and I think that's one of the difficulties with being diagnosed is people don't know what it is so you're frightened to share it and the best thing I ever did was share it, and I felt better for it and Kylie has luckily grown up with the knowledge of her condition and she's quite calm about it, very strong, a very practical young girl and I think I take a lot of my strength from her and luckily everything's worked out very well and I don't regret my choice of bringing her up with an open and honest attitude.