FATHER Mark Bostock, who suffers from a rare inherited disease, says he is driven to find a cure by his love for his 11-year-old daughter.

The 44-year-old suffers with adrenomyeloneuropathy (AMN) – a condition that started affecting him around the age of 30 – which means his mobility is badly affected and he is more susceptible to becoming ill.

His condition is the adult version of adrenoleukodystrophy (ALD) which leads to progressive brain damage in children, failure of the adrenal gland and death if not treated quickly – usually by a bone marrow transplant.

The nerves of sufferers don't work properly because of progressive damage to the myelin sheath – a fatty covering of the nerve fibres.

There are only around 200 people in the United Kingdom in total who are affected by either condition.

The condition ALD was made famous in the film Lorenzo's Oil which starred Nick Nolte and Susan Sarandon as parents desperately trying to find a cure for their son who has the condition.

Now, in a situation reminiscent of the film, Mr Bostock finds himself driven to find a cure by his love for his daughter Olivia.

Mr Bostock, a project manager for Everything Everywhere, is a trustee of ALDLife, which aims to raise money to fund research in ALD and he is determined to bring together experts from across the globe to swap research.

Mr Bostock, who lives with his wife and Olivia in Emerson's Green, Bristol said: "What really drives me is that I feel I am in a position where I can have a positive effect on finding a prevention or cure for my generation or my daughter's generation.

"My daughter will be a carrier so theoretically she could have a son who may suffer from ALD and she herself could suffer from AMN in her later years.

"There are about seven or eight little charities all over the world.

"What I want to do is devote time to raising funds and bringing all the world's researchers together.

"I am organising a conference in America and it means we can then talk as one single voice."

Discussing his experience of the condition, Mr Bostock says with hindsight he believes there were signs his body was deteriorating.

"I can look back to when I was 16 and playing football," he said.

"I would land awkwardly and my kneecap would dislocate.

"At the time I was with the RAF but when I left there and joined Orange I noticed I was staggering a bit when I was walking.

"I just put it down to the fact that my knees were shot.

"I went to see a physiotherapist and she did tests like making me stand on one leg and I was just falling over.

"That provoked a neurological investigation a couple of years after that I was diagnosed with AMN."

Mr Bostock admits he found it hard to come to terms with his condition.

"I am a really independent guy and don't deal with help very well. "At the beginning the hardest thing for me was staggering about and using a walking stick.

"If I was walking between two buildings at work and saw somebody I knew I would throw it away. "It was so bad that I would apologise for using a walking stick.

"When I realised I was going to need a wheelchair I remember sitting in the car and just breaking down, which is so unlike me.

"By going into a wheelchair I felt the last link I had with being a normal person was being severed.

"However, I am determined this condition does not affect the people around me. I never want a situation where my family or colleagues say they were going to do something but can't because of me."

On a more positive note, Mr Bostock says he encounters acts of kindness towards him every day.

"When I go to my local Costa coffee they will always come and take my order in the queue so I don't need to be on my feet long.

"Kids are always opening doors for me and Scouts have been bag packing for me at the supermarket to help my charity raise money.

"I have spoken to someone in Russia who can't use a scooter because the roads are so bad so I realise I am lucky to be in the environment I am."

To raise awareness and fund research into both conditions Mr Bostock is holding several fund-raising events and hopes to raise £40,000 this year.

On June 24 he has organised a charity ball at the Aztec Hotel in Almondsbury which features a champagne reception and raffle with prizes including a holiday to Turkey, an iPhone and signed Premiership merchandise.

He is also organising an event called 20/20 which involves 20 sponsored children's walks in a bid to raise £20,000.

Tickets for the charity ball are £45 and include a three-course meal and disco.

For more information, or if you wish to donate a raffle prize, please contact Mr Bostock at mbostock77@gmail.com.

For more information or to make a financial donation visit www.aldlife.org.