Siân was born on 11th March 1980, apparently normally after a normal pregnancy. She was small for birth-weight but this was not felt to be a problem – it runs in the family. The first few months were uneventful but Siân quickly began to miss her early developmental milestones. She seemed to have problems co-ordinating her movements and we were about to talk to our Health Visitor about her problems in beginning to crawl when, at about 11 months old, she suddenly went into a major fit.
A frantic dash to the (fortunately) nearby hospital solved that particular crisis, but then followed an anxious few days as she underwent various tests and her fits were stabilised on Epilim. Our paediatrician was unsure whether the problem was CMV or toxoplasmosis, although no trace of toxoplasmosis could be found in her blood samples. A skull X-ray clearly showed an extensive area of calcification in the lower rear part of Siân’s brain – described to us by the paediatrician as the brain’s telephone exchange to the rest of her body. To confirm the diagnosis, we were referred briefly to Great Ormond Street, who confirmed the diagnosis of congenital CMV, confirmed the need for regular Epilim and showed us how to administer anal Diazepam.
There then followed months of hospital appointments and many disturbed nights with Siân’s fits. While the Epilim clearly helped avoid yet more brain damage, it made Siân very ‘dopey’, and, after her fits seemed to subside (and with close monitoring by the paediatrician) we gingerly and slowly reduced the Epilim. By the time she was aged 6, she was completely and safely off medication. (She never had another fit). From about the age of three, she began to attend playgroup at our local special school, where she stayed as a day pupil until the age of 11. Sadly Shropshire had no appropriate secondary education provision and so she became a weekly boarder at a school in Cheshire, returning home at weekends and holidays. She came to refer to school boarding as ‘Home’ and we were ‘House’.
Once Siân was settled in school, and we had solved the problem of her fits, we began to look round for additional information on, and support for, congenital CMV. As none seemed to be forthcoming, we decided to start the support group. We found an organisation called In Touch run by Anne Worthington which put families with similar special needs in contact and, shortly after that Contact-a-Family was founded to do more or less the same thing. We started the group with just 8 families and, by the time we decided it was time to pass the group on to someone younger, we were sending out about 150 newsletters – mainly to the UK but also France, Germany, Malta, USA and Australia. Whenever we were beginning to panic about money, we would find some individual or organisation who would slip us a few quid, and so we went on in a hand-to-mouth fashion.
On one of our summer holidays in Great Yarmouth – lovely and flat for the wheelchair – we happened to see an elderly couple, both bent double pushing their grown-up son in his wheelchair. It was at that moment when both parents concluded that, when Siân reached 19 and left school, we would seek to find her an appropriate independent living placement.
Through our local Scope branch, we got to hear about the First Key scheme in Hereford, and we were able to persuade Shropshire to support it.
Siân has now been resident in Hereford since Sept 1999 . She, and her two house-mates, have support 24/7 and are ‘plugged into’ all manner of activities in the local disability community – far more than we could have provided for her at home. The bungalow is completely unexceptional on the outside but has all the hoists and aids which Siân and her two house-mates – all wheelchair users – require. We have recently swapped Siân’s Mobility Allowance for a suitable Wheelchair Adapted Vehicle. With help, she pays her own bills, takes her own decisions on shopping, clothing & meals and chooses what she would like to do each day. She is as independent as she could possibly be, given the severity of her disabilities.
Because Sian has not put any weight on her legs for some years, she has developed brittle bones and has suffered a number of leg fractures. Despite this and her other significant physical problems – she never has learned to crawl, stand or walk- and despite her speech being ‘mangled’ by the rockery in her head, she is a lively, out-going and sociable lady who seems to be able to reach out to other people and engage them in a positive way. Not bad for someone of whom the paediatrician warned that she might not see 18 months!
She can be very proud of what she has achieved.