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written by: Michelle K. Walters
Siblings: Julie and Hayley
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: m.turnbull@hotmail.com
An e-mailing list allows everyone on the subscriber list to share e-mail messages automatically. When a message is sent to the RTS E-Mailing List, all subscribers receive a copy. Responses can be made privately or to the group. Basically, it's a group discussion via e-mail. There are no fees to subscribe.
Please contact Janet Estes, RTS List Owner/Administrator at janetestes@telus.net
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