Friends' Chichester walk raises more than £9,600 after former headteacher's devastating MND diagnosis

The friends, who attended Chichester High School when it was for boys only, completed a sponsored walk from the West Sussex city to Birdham on Sunday, June 28, in support of Jamie, who was diagnosed with amyotrophic lateral sclerosis (ALS), the most common form of MND, at the end of January.

Their JustGiving appeal has far exceeded its original £3,000 target, with donations now topping £9,620.

Jamie said his life had changed beyond recognition since his diagnosis.

"It turned our lives upside down and it still feels surreal," he said.

"A year ago I was headteacher of a primary school and now I'm not able to work. My mobility has deteriorated quite quickly and I now use a wheelchair to get around. I'm having breathing difficulties and my voice is weakening. The disease is so cruel because it takes away all your independence."

Jamie first sought medical advice last September after developing pain in his lower back.

He was initially diagnosed with muscular stiffness and followed physiotherapy advice, but his symptoms continued to worsen and his mobility deteriorated.

After scans and a series of neurological tests, including MRI, muscle and nerve examinations, he received the devastating diagnosis.

"The biggest challenge has been making peace with the fact my condition is terminal and adapting to my changing needs," he said. "It's also quite overwhelming the number of appointments and health professionals involved in your care."

Despite the diagnosis, Jamie says the support of his wife, three young children, wider family and lifelong friends has kept him going.

"My wife is my carer and she's so attentive to my needs," he said. "My three young children are incredibly supportive, as are my wider family. They've all shown us so much love."

He also paid tribute to the friends who organised the fundraising walk.

"I've known some of them for more than 40 years and they all showed up in my hour of need," he said.

"I know many of them from my time at Chichester High School. Even though we now live in different parts of the south of England, they visit me regularly and keep me going.

"I was amazed by how many people took part in the walk and by everyone's generosity."

Funds raised will go to the Reading and West Berkshire branch of the MND Association, which has supported Jamie and his family since his diagnosis.

"The Reading branch has been incredible," he said. "They keep in regular contact to check that my family and I are OK. They've helped us complete necessary paperwork, provided me with a temporary wheelchair, helped me with voice recording and funded trips out with the children as well as providing essential equipment."

Jamie said the wheelchair and an adapted vehicle had helped him maintain some independence.

"We're fortunate to have an adapted car that was bought for us, which means I can still get out. It can be easy to become a recluse when you have a disability, but the wheelchair and car have helped me keep living my life."

Looking to the future, Jamie hopes greater awareness will lead to increased funding for research.

"I didn't know much about MND before my diagnosis," he said.

"It's getting more media coverage because of some high-profile rugby players, but research into a cure is still under-funded and that needs to change.

"Five people a day are diagnosed with MND in the UK. It doesn't feel like there's been much progress over the last 20 years in finding a cure."

Thanking everyone who supported the fundraiser, Jamie added: "The money raised will help support people living with MND as well as fund research to try to find a cure. Everyone was in such good spirits and so generous.

"My family keeps me positive. My children take my mind off my illness, my wife has been amazing, and my friends keep visiting and reminiscing about the old days. I've got such great memories of growing up in Chichester and I feel very lucky to have met so many wonderful people.

"My hope is to keep raising awareness of MND and continue supporting fundraising efforts."