Tracy, whose daughter Eleanor (23 months) has Turner Syndrome
Eleanor was born with puffy hands and feet and was looked at by a few paediatricians in Hillingdon Hospital on 20 December 2004. We were given the diagnosis of Turner syndrome when Eleanor was 17 days old. I remember that the first question I asked was if life expectancy was a big factor and was quickly reassured that it wasn’t.
Support
We read up as much as possible on the internet but were a bit disappointed to find that the hospital had a lack of knowledge of the syndrome.
As soon as I found Arlene's number (at the Turner Syndrome Support Society), I gave her a ring and she’s been a pillar of support ever since. It’s nice to have someone who’s not only a lovely person to talk to, but who also has first-hand experience of Turner’s.
Living with Turner Syndrome
I never really noticed how small Eleanor was for her age until I started a baby group, when she was about 5 months old. Seeing children her own age a lot taller or larger than Eleanor, kind of put her size into perspective, however she is still a very lively and happy little girl.
I do find though, that when we go out, people look at Eleanor and compare her to her sister, Cerys. Cerys is 8 months old. She currently weighs 18lb 13oz. Eleanor is 23 months old and weighs 19lb 2.5oz. Both of them are in clothing for 9 month olds and people think they might be twins. Whereas Cerys is a baby though, Eleanor is a little girl and is talking so people are surprised when they realise. They make comments on how small Eleanor is for her age and I point out that she has a growth hormone deficiency. It does worry me in the back of my mind sometimes when I am dressing them both after a bath and look how chubby Cerys is and how Eleanor looks so skinny in comparison.
Growth hormone treatment
Eleanor started on growth hormone at around 17 months old. I found it rather easy to inject once I had a few goes and Eleanor has taken to it fantastically. No matter what difficulties Eleanor faces in life I still know she is going to be a happy fun loving girl and my little princess.
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Last updated: April 2008
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