A FAMILY are preparing to celebrate the life of a brave teenage boy who lost his fight against a rare genetic disorder a year ago.

Keir Platt, from Astley Bridge, died on January 9 last year — just two days before his 14th birthday.

He had been diagnosed with metachromatic leukodystrophy (MLD) in 2005 — a condition which affects the nervous system and cannot be cured.

It meant that he lost the ability to walk and talk at an early age.

Now, his parents, Michelle Tonge and Martin Platt are preparing to celebrate what would have been his 15th birthday with a special fundraising event on Sunday.

The event, which will be held at The Bowling Green pub in Bury Road from 1pm until 4pm, will give family and friends a chance to remember the “brave and remarkable” youngster.

Miss Platt, aged 41, said: “With the anniversary of Keir’s death falling so closely to his birthday, we decided we didn’t want to be sad, we wanted to celebrate his life and think about all the past birthdays he had when he was so happy — he used to love the happy birthday song.

“Being upset is not a fitting testament to Keir’s life, it would do him a disservice because he was such a happy boy.”

Sunday’s event will be held to raise money for the Sycamore Project, also known as Zac’s Youth Bar, based in Farnworth, which offered care and support to Keir and his family.

There will be a raffle with a range of top prizes and other fun events such as face painting, tombola and entertainment.

Keir’s mum, dad and sister Erin, who is 17, were told when he was diagnosed with MLD in 2005 that he would not reach double figures in age, but he beat the odds and made it into his teenage years.

His mum said that even though a year has passed, the pain of losing her son has not got any easier.

She said: “The idea that time is a healer is not true, it doesn’t get easier, I guess you just learn to bare it a bit better.

“We always had that bit of hope that Keir would keep on going but obviously he couldn’t and sadly he just got too tired.

“He was a brave, happy and remarkable boy and I hope as many people as possible will come along on Sunday to pay tribute to him.”