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Biography
 Sheila Brown
Chief Executive Officer Birth Defects Foundation
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BDF Newlife (until recently known as the Birth Defects Foundation) is a registered UK charity founded in 1991 and employing more than 130 people.
Sheila Brown, Chief Executive Officer of BDF, was born in 1956 and raised in a small farming community in rural Staffordshire.
Leaving school early to help with the family finances, Sheila took on a variety of jobs from selling to debt collecting and married young at the age of 17. Three years later, Greg was born. "From birth, Greg was demanding and failed to develop in almost every way but little help was forthcoming from the health establishment who dismissed my pleas as neurosis. I had no experience of babies whatsoever, yet from the moment Greg laid on my tummy, I knew something was wrong" recalls Sheila. "For a long time, I believed, like millions of other mothers, that somehow I must have been to blame for Greg’s condition. Perhaps I had done something wrong; something that caused Greg to be different."
During the ‘wilderness years’, as she describes them, her feelings and ideas continued to haunt her as she sank into a period of self-remorse and aimlessness, culminating in divorce from Greg’s father.
Today, Sheila is able to articulate her experience as being akin to bereavement, a condition that affects all parents of children with a birth defect. It was at this time that the long ‘fight back’ began.
She started by demanding services for Greg that were only available at that time if a child had a diagnosis, (Greg’s conditions were as yet undiagnosed). Other parents with similar problems would ask her to help with obtaining better services for their special children.
When Greg was 5 and at perhaps his most demanding, Sheila met Colin, now her husband, by chance on a rare night out. "Colin will always be my hero" she says. "Not many men will take on the care of another man’s child and especially one like Greg." But Colin didn’t flinch and later he formally adopted Greg as his son.
In 1983, Carrick was born, and this time all was well. Twenty-two months later, Carrick had a little brother to play with when Reece was born, again well and happy.
Sheila continued to be active in the community helping families when asked, but it was not until 1985 that Greg was diagnosed as having Noonan’s Syndrome. Anxious to speak to others who shared NS experiences, she wrote to a women’s magazine asking people to contact her. Encouraged by the response, a meeting was held in a rented church hall in London where Sheila met Dr Michael Patton of Great Ormond Street Hospital for the first time. They formed a strong relationship which led to the creation of a National, and later an International support group for NS.
Rallying other NS parents to help, she constructed a postal questionnaire with Mike Patton and this basic information became the backbone for subsequent major medical research on NS.
The NS Society, Grapevine Helpline and initially BDF were all run from a converted coal house in the family home in Cheslyn Hay, Staffordshire. In 1989 Sheila met successful businessman Leonard Lewis. Together with others of the Lewis family and with Dr Patton’s help, BDF was launched in 1991. Sheila became CEO and has led BDF and the successful trading company, BDF Newlife, to become a national success story.
"Life throws all sorts of things at you" says Sheila. "You can either go under as I did for a few years or rise above them, learn from them and turn adversity into something positive."
This stood the test of time when Reece aged just 5, was struck with Perthes Disease and spent 2 years in a wheelchair whilst undergoing major operations and therapy. With the pressures of a young family and Greg continuing to have problems (he has only recently been diagnosed as suffering from Aspergers Syndrome, a type of Autism), Sheila says "I just got plain angry. Like millions of other women, I did all the right things in pregnancy, cared for my kids and thought all would be ok. When Reece was diagnosed aged 5, instead of going under, I felt this tremendous rage. In time this resolved to become a passion which still drives what, for me, has become a mission – to help children and families like mine."
For further information contact:
Sheila Brown
Chief Executive, Birth Defects Foundation
BDF Centre, Hemlock Way, Cannock, Staffordshire WS11 7GF
Tel: 01543 462777 Mobile: 07963 695009
www.bdfnewlife.co.uk
Sheila Brown has been involved and instrumental in many fields of the charity/voluntary sector. These include:
- Local Community Association – committee member and Chair Person for some years.
- Local political party – secretary, organised MP surgeries and other events.
- Clean up campaign – local village and surrounding areas was instrumental on county wide clean up initiative.
- County Voluntary Service – committee member.
- Member of C of E, Bishops working party on effects of mental handicap on families.
- Founded Grapevine Crisis line – a diocesan wide crisis and helpline for families with disabled children called Grapevine.
- C of E committee participation – past member of the C of E Parch church DCC and PCC.
- Set up ‘Christians Unite’ – cross-denominational music-based event which wen on to become a cross-church liaison body.
- Set up local youth club – and helped husband work as a youth leader.
- Sunday school teacher – local Church
- Co-founded ‘Seed’ – a Christian bereavement support body in South Staffs.
- New Housing Association – board member, transitional year when new HA was taking over all council properties in South Staffs.
- Parent Governor – two Special Needs Schools for two three-year terms.
- Parent Governor – local secondary school 1 three-year term.
In addition Sheila Brown has been involved in:
- Giving thousands of talks to schools, groups of all sorts including Rotary, women’s groups and many more, talking about the effects of child disability on families.
- Trained Youth workers in issues around young people and disability. Herself trained as a C of E Counsellor with special interest in bereavement and loss and family crisis and post-traumatic stress disorder in children.
- Travel across the country highlighting NS and helping families – acting volunteer advisor to families.
- Studied Sociology with Open University
- Advised other charities and specific condition groups on setting up, fundraising, service provision and setting up trading activities.
World Alliance of Birth Defects Prevention Organisations based in New York – part of founding group.
- Appeared in media – given thousands of interviews on the subject of families and birth defects.
- Received crash induction medial research experience – to help with founding of BDF at St. Georges Hospital, London – this meant weekly travel to London leaving before 6 and arriving past 11pm while Colin cared for the children.
- Written and co-authored several booklets on NS and birth defects and edited patient material for health authorities and other organisations.
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