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Julie and Hayley are my wonderful twin sisters with RTS. When Julie and Hayley were first born they did not know what was wrong with them. They were born with shadows on the lungs, Julie with a sixth toe, terrible
respiratory problems and would take up to 4 hours to feed 5ml of milk and then usually projectile vomit, It was not until the twins were a year old (and I was 4) that Great Ormond Street Hospital in London diagnosed
the twins with RTS.
RTS still is very unknown in England and although it is speculated that it is a genetic disorder a meeting with Professor Rubenstein confirmed that although they believed that a part of the
16th chromosome was missing, this was not found in all cases and therefore the cause is still a mystery.
Today the twins are 27 and a handful to say the least. They still live with my parents with the
support of my grandmother (aged 83 and the biggest source of support) and myself and my partner. I am now a mother myself and obviously went through the thought process of whether I would have a child with RTS but
my son, Keir aged 2, is fine and he and my sisters get on brilliantly.
The twins do still have a variety of medical problems and behavioural. They are considerably overweight despite living on a
constant diet and my parents battle against their 'stealing' food constantly. Julie has a defunct thyroid whereas Hayley has more challenging behaviour.
As identical twins, they are very different in
personality although naturally also have strong resemblances. I would be happy to regularly communicate with visitors to the site and families with RTS as I have noticed many of the children are much younger.
Shame such a wonderful information source was not available years ago - my parents have really worked with the twins in the dark.
The twins are naturally outgoing, extremely funny and very popular -
definitely once seen never forgotten. We would not be without them and for anyone feeling despair at such a diagnosis - I can assure you that you have so much in the way of reward ahead of you, despite all the
difficulties you will have to face. RTS kids and adults are just extremely special people with a gift to make all they meet smile. Michelle, Essex, England. Email: mitch.walt@virgin.net
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