Family of Sunderland grandad claimed by Motor Neurone Disease look to give others gift of speech

Barry Lambert, from Castletown, died in July, 18 months after he was diagnosed with a rare form of Motor Neurone Disease (MND).

The HGV driver, who worked for companies including Rock Top and Alex Smilies, began suffering symptoms including discomfort in his throat, with a specialist establishing he had progressive bulbar palsy.

As it stole his ability to talk, his family are now looking to raise £2,000 which will help buy an iPad, which can be used to record a patient’s voice before it is lost to what Barry’s relatives have called a “disgusting disease.”

On his wishes, his brain and spinal cord were donated to a brain bank to help further research in the hope a cure can be found.

On what would have been Barry’s 58th birthday, his daughter Steph, 30, shaved off her hair to raise cash. Her locks will also go to help create wigs through the Little Princess Trust.

The support worker, who is mum to Anthony Powell, has been supported by her sisters Natasha, 29, who is mother to Dolcy-Beau, four, and Dayna, 27.

The death of Barry, who was Hendon born and bred, also left his wife Zena, 58, bereft. The couple had been together since they were at Thornhill School.

Steph’s headshave was already planned before Barry lost his life due to respiratory difficulties linked to his illness – his condition had still allowed him to be mobile and he had been on his feet on the day he died.

She has hit her target, but hopes people will still back the appeal as they do their bit to help families like their own.

Steph said: “He knew about it and my Dad’s view was if it could help anyone like him, he was happy, and was also for helping research.

“My dad allowed students to study him and helped wherever he could with the research even after death, so I feel being half of him, that I too could help.

“We want to do anything we can, because it’s so awful and there's no hope and we want get out there some awareness as well, because when people hear about it, they think of Stephen Hawking, but what my Dad had was the total opposite to the form he had.

“We want to get this iPad so that someone can record their voice, so that when they can’t speak anymore, they can use it.

“That was one thing with my Dad, I can’t remember what he sounded like anymore and I don’t want the same to happen to other families – he had to use pen and paper.”

Cash raised by the family will be sent to Finding Neuro, which funds medical research in the hope of curing neurological disorders, and is involved in trials for DIPG brain tumours, the second most common type of primary, high grade brain tumour in children Parkinson's Disease and MND.

Anyone who would like to back appeal can donate via www.justgiving.com/fundraising/stephanie-lambert4.