Campaigning mother and magistrate from North Leigh who led medical revolution in a fight against rare condition

Witney Gazette: Ann Hunt Ann Hunt

A MOTHER-of-three who strenuously campaigned for awareness of a rare condition after her son’s death has died aged 75.

After her youngest son James was revealed by doctors to be affected by the severe condition Tuberous Sclerosis, Ann Hunt MBE could easily have kept her difficulties to herself.

Instead, the North Leigh campaigner had the courage to start a new organisation, the Tuberous Sclerosis Association of Great Britain, with a mother from Glasgow, Esther Galbraith.

The rare genetic disorder causes mainly non-cancerous tumours to develop in different parts of the body and can lead to a number of other health conditions including epilepsy, autism, learning disabilities and heart, kidney and lung problems.

Her decision would define the rest of her career. She would be secretary, chairwoman, president, head of research, trustee and eventually became an honorary life vice president of the association in 2006.

And after starting in 1977 with just 50 families signed up and a float of £25, the charity now has advisors based across the UK and continues its work.

Mrs Hunt also led an active political life as a member of the Witney Labour Party, as well as chairing the North Leigh Parish Council and the Oxfordshire Community Health Council, the latter from 1988 to 1991.

From 1981 she was also a magistrate, carrying out her duties well into her retirement. In 2002 she was made a Member of the Order of the British Empire (MBE), for her services to families affected by inherited diseases.

Ann Mercy Caroll was born in Welshpool, Wales, on October 25 1938, to parents Elizabeth (nee Randall) and Lawrence, who were both teachers.

She grew up in Essex, where her parents found work after the war, and had one brother, Peter, who is now 67. Mrs Hunt attended City of London School for Girls, in Barbican, London, leaving in 1956 to study chemistry at Cambridge University. There she met her future husband, John Hunt and after graduating in 1961, the couple were wed in Romford, Essex, on September 3.

That year Mrs Hunt took a job as a research assistant at Tube Investments Research Labs, in Cambridge, using electron microscopy to analyse materials and substances. But in 1963 she and her husband moved to America to work for Bell Telephone Labs in New Jersey.

There she did more work with electron microscopy, as well as electron and X-ray diffraction.

They stayed until 1965 and after returning to England had three children. David was born in 1966, followed by Helena in 1968 and James in 1971. At birth however, James was diagnosed with Tuberous Sclerosis, an incurable disease that was the result of a genetic mutation.

In 1977 Mrs Hunt founded the Tuberous Sclerosis Association to link up with other parents and share experiences, as well as to spread information about the condition. James died aged 13 in 1984, but she continued to run the association, at first from her home and later carried out crucial research into behavioural and physical aspects of the disorder, publishing a number of papers.

She became research director at the charity in 1993, a role she held until retirement in 2006.

From 1988 to 2001 Mrs Hunt was a researcher at Oxford University’s department of psychiatry, a job in which at one stage she spent three days a week studying the behaviour of children affected by Tuberous Sclerosis. She also sat as a non-executive director on the Oxfordshire Learning Disability Trust from 1992 to 1997 and was a member of the Department of Health’s gene therapy advisory committee from 1996 to 2002.

Ann Hunt died peacefully at home on June 25. She is survived by her brother Peter, children David and Helena, as well as five grandchildren. Her husband predeceased her in 2012.

Her funeral will take place today at 11.15am at Oxford Crematorium. All are welcome to attend. A reception afterwards will be held in North Leigh Memorial Hall, in Park Road, North Leigh, at 12.30pm.

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