Mum at bedside of youngster as he loses brave fight against rare illness

A YOUNG boy who won the hearts of the town for his brave fight against a rare incurable illness, has died.

Michael Strangwood, who was 13, had spent the past five years in a twilight world after the disease robbed him of all his senses.

He died at the Royal Bolton Hospital with his mum Pam at his bedside.

His father Paul said: "He had a short chest infection which we thought had cleared up but his condition worsened.

"The end was sudden and quick but Pam was with him. We always made sure we never left him alone."

Michael became known as 'the Lorenzo's Oil boy', as he suffered from the genetic disease adrenoleukodystrophy (ALD) which was featured in the Hollywood film Lorenzo's Oil.

The disease affects one in half a million boys and is caused when the body does not produce an enzyme which breaks down fatty acids, gradually imparing the senses.

He was disagnonsed in March 21, 2000, when he was eight - and he lost his fight for life almost five years to the day later.

He had gone from an active little boy who loved to ride his bike, to one trappped in a silent world.

Mr Strangwood, said the family were devastated at Michael's death, especially his younger brother Andrew.

He said: "Michael had gone through the last 11 months without any illnesses, especially in the winter months when he was prone to infections. He had been out shopping at the weekend. We had taken him to buy some lavenders for his garden and some flowers for his mum.

"He started being unwell on Monday morning as he was getting ready for school -he attended Birtenshaw three days a week.

"We took him to hospital and he seemed to settle but in the early hours he deteriorated and died on Tuesday morning. I arrived 15 minutes later."

"We are devasted but we have spent five years not knowing when the end would come. He lost all his senses in the first 12 months of the illness. He was a battler and a very courageous little boy. Right up until the end, he had a cheeky grin which always lifted our spirits and kept us going.

"We don't know what Michael thought, he could not see or hear. But occasionaly we would get laughter from him and his eyes would look around a room as if there was some recognition there."

Mr Strangwood has been overwhelmed at the number of telephone calls and cards he has received from people who knew about Michael. "We want to thank everyone who has helped over the five years. We hope Michael's illness will make people aware of ALD."

Although Michael's life was cut short, his final years were filled with love from his family.

They took him to DisneyWorld and he was guest of honour at the Manchester Air and Space Museum and he was awarded a top scouting honour - he had been a member of the 7th Bolton North (Astley Bridge Methodist) troop. Volunteers transformed a patch of garden at the family home on the Oldham's estate so he could enjoy the sunshine in his wheelchair and his bedroom was specially adapted with lifting equipment paid for by donations from the public. Extras making a film in the town also gave donations which paid for a specially adapted bath for Michael. Mr Strangwood said although it was too early to say if they would continue fund raising, he added: "We won't walk away from it as there are lots of other children out there who need help." Michael's funeral will be held on Thursday, March 24, with the funeral procession leaving the family home for a service at St Paul's, Astley Bridge at 3pm followed by cremation at the West Chapel at Overdale. Donations to Derian House Children's Hospice.