Brave Alice fights for youngsters' right

A COURAGEOUS teenager has overcome a desperate illness to play a leading role in a Government think tank to improve the lives of young people.

Richard Smith

A COURAGEOUS teenager has overcome a desperate illness to play a leading role in a Government think tank to improve the lives of young people.

Alice Lincoln will use her experience as a brain tumour victim struggling to cope with inadequacies of the health and education system to persuade ministers to make changes.

They will discover that the 16-year-old from Woodbridge has a unique perspective on life after she was diagnosed with an extremely rare form of cancer which only affects three people every year.

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The Farlingaye High School pupil was so ill that doctors feared she could die. But today Alice, from Woodbridge, is remarkably philosophical about her ordeal and future.

She said: “Basically, my body crashed and I can not remember anything over a long period of time and they were wondering whether I was going to die, whether I was at the point of death.

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“Now I have resolved that I will do my best and I will not let what has happened stand in my way.

“There are some good things that came out of my experience that I would not have had otherwise, and there were some people I met who were really great.

“However, I have had a brain tumour and my brother has Down's Syndrome and I have seen some faults in the education and health system that other people do not know about.

“If it is possible I want to make sure that no-one else suffers from what at times were just indescribably horrible experiences. I plan to make as much a difference as I can.”

Alice will be campaigning for more privacy for children in hospital - she spent 10 months at Addenbrooke's and Ipswich hospitals - and she will highlight the role of social workers.

She has one social worker while her brother, Sam, nine, has a different social worker and her parents, Julia and Bob Lincoln, deal with between 30 and 40 health and education professionals.

Alice said one overall social worker would have a better understanding of the family's complex health needs.

Mrs Lincoln first became interested in the Children and Youth Board project to advise the Department for Children Schools and Families this year. It is for 25 children aged eight to 18 and is running until April.

But Alice suddenly fell ill with double vision at the start of the summer holidays in 2006. An intelligent girl who enjoyed singing, karate, and reading, she and her parents were catapulted into a terrifying world of crisis management for a rare illness.

Alice was so ill after a period of chemotherapy that she can not recall the events of several weeks from November 2006 to January 2007.

“I lay in bed and all my family could do was read to me and apparently I asked them to stroke my legs and arms,” she said.

Alice eventually returned to school on a part-time timetable in a wheelchair and today she still wears an eye patch to alleviate problems caused by double vision.

Mrs Lincoln said: “Alice is doing fine. The long-term prognosis is that she should be fine, although she is not going to be the person she was before.

“Our view is that our life is now travelling in a different direction - everybody has things to cope with - and we are finding our own journey in life.”

Her daughter added: “I had a fairly unique perspective on life with a little brother with Down's Syndrome, and what has happened to me has given me a different way of looking at things.”

Alice, an advisor on the Children and Youth Board, is due to meet Ed Balls, secretary of state for Children Schools and Families, at an event at London's Hilton Hotel on Monday.

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