It all started in 1980 although we know cmv was around way before then.
Stan and Fay Courtney’s daughter, Sian, was born in March 1980. While being of low birth weight – not unusual in Stan’s family – all seemed to be well. It quickly became clear that all was not well as Sian developed seizures, mainly at night, and her parents got used to administering the appropriate medications. The local paediatrician began to suspect either congenital CMV damage or possibly toxoplasmosis. An X-ray of Sian’s head showed a large area of calcification in the lower back part of her brain – described by the paediatrician as the brain’s telephone exchange with the rest of her body. As a result her speech is unclear, she has major co-ordination problems and is a wheelchair user. A brief visit to Great Ormond Street Hospital confirmed the diagnosis of congenital CMV damage.
Once Stan and Fay had got their heads around the seizures and the medication, they began to look for information and support but none was available. The health visitor knew of an organisation run by Anne Worthington called In Touch which aimed to match up families with the same rare condition. Anne provided Stan with 8 other families and thus was born the CMV Support Group. Later Anne’s group was superseded by ‘Contact-a-Family’ who provided basically the same service but who also produced a veritable encyclopaedia of rare conditions with details of the relevant support groups.
At first their search for information proved fruitless and, clutching at straws, they wrote to Friends of the Earth to see if this virus may have escaped from places like Porton Down and they replied with a contact – Professor Paul Griffiths at the Royal Free Hospital in London. A visit to the Royal Free and a long chat with Professor Griffiths enabled them to put together some information leaflets for families.
Professor Griffiths kindly agreed to be a patron of the group as did Jean Boht, an actress who played Mrs Boswell in the then popular TV series ‘Bread’.
It quickly became clear that CMV is not one condition but a veritable spectrum from minor speech, hearing and mobility problems up to major physical and mental impairment. Stan and Fay were even contacted by families of neo-natal death and stillbirth. They therefore developed a basic questionnaire for families to complete so that they could match type and level of disability.
They also began receiving requests for information on CMV from adults who had the virus. It was thought that CMV may have had a role in Chronic Fatigue Syndrome (ME). They clearly could not help these people and, to avoid further confusion, it became the Congenital CMV Association.
Over the months and years they would receive a steady flow of letters and phone calls from affected families and they would send our information leaflets and – should they wish to be matched to similar families - a questionnaire. From time to time – usually about 4 times a year – they generated a newsletter that contained any new snippets of information gleaned and short pen pictures of new contacts. At first they ran the group on an original Commodore 64 computer which was later up-graded to an Atari ST 1024. This gave them access to word processing for newsletters and a database for family matching.
Throughout the years, the group worked on but had no constitution, no committee and no minutes. It was not registered as a charity. While they kept track of any small donations they received, these were quickly used up in postage. All other needs – paper, envelopes, printer and ink, and telephone – were funded by Stan and Fay.
As the years went by and their daughter grew through school and into independent life, they found it increasingly difficult to relate to all the new referrals – predominantly babies, By the time they decided it was time to pass the group on to someone younger, they were sending out about 150 newsletters – mainly to the UK but also France, Germany, Malta, USA and Australia. All this was funded on a shoe-string and depended on small and generous donations.
Stan and Fay hope that families found their newsletters and matching helpful - but they are left with the continuing sadness that, even now, there is no effective vaccine to prevent this terrible condition.
Many thanks Stan and Fay Courtney for this interesting insight into the support group and for helping families when there was no help available.
In 1986 in became the UK CMV Association and in 2000, Stan and Fay passed on the running of the group to Keri Barzotelli and then to Carmen Burton.
That early start was invaluable but in 2011 it was decided that the responsibilities needed to be shared and so our first Board of Trustees was elected.
A new name was needed to reflect the charity and its aims and so CMV Action was born. With a lot of hard work and fundraising, we achieved registered charity status in 2012.
The internet has opened up so much communication and we now liaise with other International CMV groups, have a great website and a voice on facebook and twitter.
There have been a few changes to the Board of Trustees, all working voluntarily to limit the devastating impact of CMV for those currently affected and for future generations.
We offer advice and support to anyone affected by congenital CMV. We work with medical professionals, support research and raise awareness of the virus.
We have an increasing membership and media interest, and a renewed sense of purpose.
We are going from strength to strength.
Many thanks to Stan and Fay, Keri and Carmen, and anyone else from those early days, for starting the group which is needed now as much as ever.