North Walsham lad with incurable disease celebrates coming-of-age

Tears and beer will flow at a coming-of-age party this weekend when a brave young man downs a pint to celebrate the 18th birthday his parents thought he would never live to see.

More than 50 friends and family will gather in North Walsham's Black Swan pub to toast Ethan Brown who was born with a rare and incurable genetic condition which claims the life of many sufferers before they reach adulthood.

But Ethan is still smiling after years of increasing disability and numerous infections as a result of the degenerative disorder ataxia telangiectasia (AT).

Ethan knows that his lifespan is short and his parents Linda and Charlie, both 58, have already planned his funeral.

But on his birthday, as on every other day, the family will put thoughts of the future to one side and enjoy precious time together.

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'We know he's flying pretty close to the wind now because not many children with AT live beyond their early 20s. We've never lied to him - he knows his prognosis - but we put it to the back of our minds,' said Ethan's mum Linda.

She and husband Charlie, both 58, of Hadfield Road, North Walsham, had no idea anything was wrong with their first and only child until he started at the town's Millfield School, aged about four-and-a-half.

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Ethan walked, talked, ran and played football at the same stage as his peers and it was only when he contracted pneumonia and had to be admitted to the Jenny Lind children's hospital, in Norwich, that alarms bells rang.

When the little boy would not respond to treatment he was tested for a wide variety of conditions and was eventually diagnosed with AT.

Mrs Brown remembers the numbing journey home after they were told about the cruel condition.

'We'd never heard of it before. It was a real bombshell. You never expect to be told that your child will die before you,' she recalled.

Medical staff made the couple promise not to wrap Ethan in cottonwool and he stayed at Millfield, eventually using a wheelchair full-time as he became unable to walk.

Nowadays he is very prone to infections, has difficulty holding objects and needs support to sit up, but he remains mentally alert and enjoys his favourite TV programmes - Top Gear and Strictly Come Dancing. Mrs Brown said he was eagerly looking forward to Saturday's 'Strictly' final.

Ethan is now a pupil at Woodfields Special School, in Sheringham, where he will stay until he's 19.

Twice a month he is taken out for the day by two staff members from the children's hospice at Quidenham and enjoys travelling by train to Cromer, Wroxham, Sheringham or Norwich where he loves shopping for clothes, said Mrs Brown.

Ethan, who is a bit of a 'petrol head', had also loved an August bank holiday trip to Pleasurewood Hills with the East Coast Truckers, travelling in a lorry cab from County Hall, in Norwich, to the theme park.

Mrs Brown gave up a job as cook at the former Elizabeth FitzRoy charity's Meadow Cottage home, in Overstrand, to care full-time for her son. Her husband is a gas worker with the National Grid.

She said the family wanted to thank all those who had supported them through the years, especially hospital staff and those at North Walsham's Birchwood Surgery.

Mrs Brown added: 'We're full of admiration for Ethan. He's such a fighter. He has his teenage strops when I tell him he can't do something but most of the time he's a good lad - he has a lot to put up with. We love him to bits.'

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