Steffan Bowles' life changed forever when he was struck down with meningitis at the age of ten.
The youngster developed a huge brain abscess, had to have eight life-saving operations and spent three months at Hurstwood Park neurosciences centre in Haywards Heath When he left the centre he could not walk or talk properly and had to re-learn many basic skills like brushing his teeth and getting dressed.
Steffan spent several months at Chailey Heritage, near Lewes, which provides support for children with brain injuries and disabilities.
When he left, his parents Jill and Gavin and his three older brothers carried on the long job of getting him back to fitness.
Now 15, the youngster has made a tremendous recovery and is doing well at Longhill School in Rottingdean.
Mrs Bowles, who lives nearby, said: "To look at him you would not think he had any problems.
"He has difficulties with his short-term memory and has to think things through very carefully but he has done really well.
"He has a tube leading from his brain to his stomach to stop fluid building up in his brain and may need an operation in the future to make sure it is still working properly.
"For the rest of his life he will have to take tablets which stop him from having a fit.
"Considering that when he was first ill he nearly died a couple of times and had to go through so many operations, he is tremendously well."
Mrs Bowles said that during Steffan's illness she would have liked to have been in contact with other parents.
She said: "It was a tremendous shock to all of us and a lot to deal with. It takes some time to get over something like that.
"We got support from the Headway charity for people with brain injuries which is linked with Hurstwood Park and it was very helpful but our local group was really aimed at adults.
"It would have made a lot of difference if there had been a group for children. We could have exchanged experiences and given each other help and advice.
"Steffan is doing well now but there still must be parents who could benefit from something like this."
Mrs Bowles' wish has been granted as a support group specifically targeted at children and young people opens in Brighton this week.
The Child Brain Injury Trust was founded in 1989 and moved to its Oxford head office, based at the Radcliffe Infirmary, in 1992. It has a network of support groups and this one has been set up by former nurse Sheila Riches, a solicitor at asblaw in Brighton who specialises in brain injury work.
She spent 15 years in the NHS, ten as a sister in the head injury intensive care unit at the Radcliffe Infirmary, Oxford.
Mrs Riches said: "We are hoping for a good turnout but it may take a while to get established.
"The aim is to organise outings, activities, expert speakers and support networks."
Children and teenagers who may have suffered a brain injury and their families are invited to the first meeting at the asblaw offices in Claremont House, Queens Road, tomorrow from 7pm to 9pm.
The group plans to meet on the last Thursday of every month.
The adult group run by Headway is also at asblaw on the third Thursday in every month.
For details of either, call Mrs Riches on 01273 828041.
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