THE family of a Cockenzie woman who has been struck down by a devastating disease have taken on an epic 450-mile cycle ride to thank the charity which has helped them keep her at home.

Val McLeod, 64, was just a few months into her retirement when she was diagnosed with motor neurone disease (MND).

Just 13 months on she has lost her ability to speak, control emotions and is confined to a wheelchair.

Husband Iain, who has taken on the role of her carer, said the “vicious” disease would have made it impossible for his wife of 20 years to remain at home without the support of MND Scotland.

And he said staying within the family home was his wife’s “sole focus” as she became more and more reliant on others.

Iain, who has given up his job with BT and is now a self-employed taxi driver, said: “MND is a terrible disease. It’s terminal, untreatable and vicious, and in the space of a few months it has taken Val’s speech, ability to control emotions, and strength.

“Remaining at home is her sole focus and in order to do that we’ve needed loads of support and equipment, all very expensive and not all available on the NHS. The funding gap has been met by MND Scotland and made it possible.”

The couple needed to install a stairlift as well as adapting the house for a wheelchair, breathing equipment and more.

Iain’s son Robbie, 26, and his girlfriend Sam decided to take on a charity cycle from their home in London to Cockenzie to raise funds for MND Scotland and its English counterparts the MND Association, as a thank you for the support Val has received and to raise awareness of the condition.

Iain, 53, chairman of Seton Burns Club, said: “Val has been Robbie’s stepmum since he was six and they wanted to do this to thank the charities for helping families like ours and raise awareness.

“The cost of adapting the house and ensuring we have all the equipment needed is not covered entirely by the NHS and without the support of these charities many families simply couldn’t do it.

“We feel very fortunate.”

Motor neurone disease is a rapidly progressing degenerative condition which can affect people of all ages.

The condition has been given a high profile recently with former Scotland rugby international Doddie Weir, who was diagnosed with MND this year, launching a foundation to help find a cure for the disease.

The late Gordon Aikman, a political researcher, helped raise its profile by campaigning for more work to be carried out after his diagnosis, leading to First Minister Nicola Sturgeon carrying out a review of MND care in Scotland.

The average lifespan for a person after diagnosis is just 14 months.

Robbie and Sam arrived at Cockenzie Legion last Thursday evening after a five-day trek from London on their bikes and were met with a hero’s welcome.

To support their efforts, go to bit.ly/2z47gR8