GRAHAM and Deirdre Kennedy had it all. The childhood sweethearts had met at the age of 15 in their native Glasgow, and married at 19. Deirdre ran a nursing agency. Graham was a successful York businessman. Best of all, they had two amazing children.

Then, when their son, Fraser, was ten and their daughter, Rebecca, was seven, something happened to change their lives for ever. The children were diagnosed with a devastating neurological condition called Friedreich’s ataxia.

The condition progressively attacks the central nervous system. Within a few years, Fraser and then Rebecca were confined to wheelchairs.

Elsewhere on this page, Graham writes movingly about how he and his family came to terms with the devastating diagnosis.

It changed everything, he and Deirdre admit.

“I had always thought of myself as a golden child,” Graham says. “I had a very loving childhood. I had a fantastic job, a beautiful wife who was my childhood sweetheart, and these two amazing children. I thought I could conquer the world. And then it all changed.”

Graham had always been driven. Deirdre came from a middle-class Glasgow family; Graham was from a council estate – even if it was, as he jokes, the “best council estate in Glasgow”. “But I was poor. Most people from hard backgrounds I know are driven to succeed.”

The diagnosis of his two children 19 years ago changed his perspective on life. He was still driven, but now it was so he could provide the security the children would need as they grew up.

He would have swapped everything to see a cure for Fraser and Rebecca, he admits. But he was also inspired, and humbled. “I drew strength from Fraser and Rebecca. They never moaned. They never complained. They are inspirational to me.”

He had just bought his own business – York-based Inner Space Stations – so he could afford to send the two children to Bootham School, in York, where they receive the personal attention they needed.

But he and Deirdre also wanted to do more. They wanted to raise money so as to help research a cure for Friedreich’s ataxia.

Deirdre began the fundraising. She held coffee mornings, and even persuaded the actress Maureen Lipman to do a one-off show. Graham managed to organise a national “butterfly campaign”, in which people put butterfly stickers in their cars to raise awareness of Friedreich’s. He persuaded the actress Joanna Lumley to launch it.

“She said she couldn’t refuse him because her first boyfriend was called Graham Kennedy,” Deirdre says.

But it is Graham’s “Big Bad Bike Rides” that have become the stuff of local legend.

The first one was in 1991. More than 100 friends and business acquaintances took part – and between them, they raised £20,000.

Since then, there have been ten more rides – some in Yorkshire, others in Scotland, Ireland and Belgium.

Hundreds of friends and acquaintances have taken part over the years, and between them they have raised almost £600,000 for research into the condition.

Graham received an MBE for services to charity in the New Year Honours List. It is an award, he says, that should be shared by everyone. “It was a complete surprise, but a real honour. Not so much for me, as for all the people who have helped over the years.”

He is determined to continue with his fundraising.

This year’s bike ride, in September, is already being planned: a 75-mile circular ride from Pitlochry in Scotland. It is a beautiful part of the country, and it will be a fun ride, Graham says – but the emphasis, as always, will be on raising serious money for research.

Ultimately, Graham hopes to take his lifetime fundraising total past £1 million.

The research is still needed, he says.

There have been developments in our understanding of Friedreichs ataxia. One breakthrough led to the identification of the Friedreichs gene. That made prenatal testing possible, so that Graham and Deirdre were able to go on to have two more, healthy, children – Sophie, now aged 17, and Lucy, 14. But there is still no cure for Friedreich’s.

Fraser is 29. He has a masters degree in politics and works part-time for a research organisation looking for better ways to influence international aid policy. He may be confined to a wheelchair and need 24-hour care, but he still manages to go skiing and paragliding.

Rebecca, 25, is also confined to a wheelchair. She is studying for a PhD at the University of York. “She is helping with research into autism,” says Deirdre.

They are, as Deirdre says, amazing. But what she and her husband now want above all is a cure – for Fraser and Rebecca, and for all the other families struggling to cope with this devastating condition.

Graham is fiercely protective of his family, but his determination to continue to raise funds and awareness about Friedreich’s has prompted him to tell his story in public.

“These two extraordinary children have inspired me,” he says. “I hope their story will inspire others too.”

Next week, Graham launches a new website, dedicated to raising awareness about Friedreich’s ataxia, and to promoting his bike rides.

The bigbadbikeride.com site goes live on Thursday. It will include information about Friedreich’s, and Graham’s own personal account of how his family coped with the condition. There will also be details of the 2010 bike ride, and how to get involved.

You can also find out more about ataxia or make a donation by visiting the website of charity Ataxia UK at www.ataxia.org.uk


What is Friedreich’s ataxia?

ATAXIA means “absence of order”. People with ataxia have problems with co-ordination. There are many different forms of cerebellar ataxia. Most are inherited. The most common form is Friedreich’s ataxia.

This is a degenerative neurological disorder which usually becomes apparent in children only when they reach the age of seven years and upwards. It attacks the central nervous system and by the age of 13 the child will be likely to have to use a wheelchair.

There is currently no cure and no treatment for Friedreich’s ataxia.

All the funds raised from Graham Kennedy’s Big Bad Bike Rides have been and will be directed at research projects currently underway in the UK and Europe.

In this extract from his online letter, Graham Kennedy talks about how his family came to terms with Friedreich’s

HOW do you raise half a million pounds for charity? First of all, something extraordinary must happen to you. Something which forces you to reassess your life and ask yourself questions that you never wanted to ask.

That moment came to me in Great Ormond Street Hospital 19 years ago. My son, Fraser, had gone to the hospital to undergo tests. We knew something was wrong with Fraser’s balance, but in all other aspects he was a beautiful, healthy little boy.

He was ten years old and I worshipped him. OK he couldn’t kick a ball, but I was sure that we would fix whatever was wrong, and I dreamed of all the amazing things we would do together.

I was at my business in York when I received a call from my wife.

“Graham, I would like you to come down to London now.”

“Why?” I asked, “It’s really inconvenient. What’s wrong?”

“Graham, just come down.”

She wouldn’t tell me why, she simply said it was about Fraser.

I arrived at the hospital and was led into a room with my wife and a doctor.

“I am sorry to inform you Mr Kennedy, but I believe your son has Friedreich’s ataxia.” My wife held my hand.

“What’s Friedreich’s ataxia?” I asked.

“It’s a genetic disorder and I’m afraid there is no cure or any treatment”.

She explained the symptoms and told me that my son would be in a wheelchair in his early teens.

There was worse to come. The next day another doctor told us that our precious seven-year-old daughter, Rebecca, who seemed fit and healthy, had Friedreich’s ataxia too.

It was too much. Too much to cope with. We left the hospital with the children in the back of the car. Both of us were in shock. We couldn’t speak and I was thinking life wasn’t worth living.

From the back of the car came a little voice, “I’m hungry. Can we have a MacDonald’s please?” I laughed, looked at my wife, saw her beautiful face and knew we would carry on.

My wife got involved with Ataxia UK and encouraged me to raise funds towards research. I came up with the idea of a 50-mile bike ride. I hadn’t been on a bike since I was a teenager, but I had a great bunch of friends and a super PA to help me organise it.

That was in 1991. I took 111 superheroes on a 50 mile route from York to Filey. We had no costs as I managed to persuade lots of people to volunteer to help. We raised over £20,000. Everybody had a great time and I was amazed by people’s generosity.

That year, all our efforts seemed worthwhile as there was a breakthrough that led to the discovery and identification of the FA gene. Prenatal genetic testing was now possible.

In 1992, a miracle happened. My wife gave birth to a little girl and we knew she would not have Friedreich’s ataxia.

The miracle was repeated in 1995. We had another daughter, and we knew she was free from Friedreich’s ataxia too.

Over the next 14 years, I continued to organise bike rides. The events grew bigger and the funds we raised kept increasing.

In September, 2006, I organised my tenth ride and I took 110 Combat Troopers to Belgium to complete a 110km ride. We raised more than £80,000, breaking the £500,000 barrier in funds raised directly from the bike rides.

I still don’t know why God chooses innocents to cope with ataxia, but I do know that you can never give up. I believe that one day there will be a cure and I will do my best to help make that happen.