Belfast Telegraph

'It'll be hard to stay quiet for 21 hours but it's nothing to what this disease put John through'

By Staff Reporter

A Co Antrim woman is doing a sponsored silence for a charity fighting to find a cure for a disease that robs sufferers of speech, movement and the ability to breathe.

Self-confessed chatterbox Lisa Smyth will fall silent for 21 hours to raise money for the Motor Neurone Disease Association - just two days before the funeral of her uncle, who lost his battle with the condition on June 29.

John Leeuwangh (69) was diagnosed with the disease in May last year after family members noticed he was slurring his speech.

The father-of-two underwent numerous tests before doctors discovered he had MND.

Speaking ahead of her challenge, Lisa (36) said: "MND is a devastating condition. Typically, the life expectancy of someone with MND is three to five years from the onset of symptoms, but John didn't even get that long.

"It started off with his speech being affected and problems walking, but over time he developed cramping, and a cough. Within five months of being diagnosed he was having problems eating and drinking.

"In November John had to start using a breathing machine and, by this stage, he said he took each day as a blessing."

She added: "Then, in December, he had to have a feeding tube fitted to help him get the nutrition he needed, but even then his weight dropped from 15 stone to 8.5 stone. By February his speech had disappeared."

There are about 120 people in Northern Ireland living with MND.

The condition damages parts of the nervous system and eventually it may become impossible to move, swallow, speak or breathe. There is no cure for MND and only one drug available that can increase the length of survival.

Said Lisa: "John was still able to climb the stairs in his house up to two weeks before he died. In spite of all this we didn't realise the end was so near and I really believed he would still be alive to see me do my silence.

"He had such a funny sense of humour and I think he relied on that to get him through.

"Anyone who knows me knows that I am a chatterbox, but I'm determined to stay quiet for 21 hours. It will be tough, but it will be nothing compared to what John went through."

  • To sponsor Lisa and help her support the MND Association, log on to her fundraising page at

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