August 23 2014 Latest news:
Wednesday, June 26, 2013
Young dad from Fremington and his family launch a fund raising appeal to help cope with the effects of living with motor neurone disease.
"Because we had two young children, the thing was to take every day as it comes and be as normal as we could for them."
A Fremington family living in the shadow of motor neurone disease are bravely facing the future and taking each day as it comes.
Dad Michael Morgan, 31, was diagnosed with the condition when he was just 28 and has since lost most of his mobility, but he and wife Jodie are determined to provide as normal a life as possible for their two children.
The former Bideford boxer, footballer and construction worker known to everyone as ‘Mik’ now needs a machine to help him breathe, is unable to move his arms and can no longer walk, but continues to look on the brighter side of life.
Family and friends are busy fund raising to buy a state-of-the-art computer system costing around £14,000 that will drastically improve his quality of life as his condition worsens.
"We have been together 11 years this year and have been through it all."
Sufferers have an average life expectancy of three to five years, as the progressive disease causes weakness, wasting of muscles, loss of mobility, difficulties with breathing, swallowing and speech.
Mik and Jodie, 28, both come from North Devon but were living in Daventry, Northamptonshire, when he began getting cramp in his hand, which progressed to weakness in both arms and he had to give up his job as construction site tester.
In February 2010 and after a year of hospital tests the couple were told the terrible news: “When they told me what it was I was devastated,” Mik told the Gazette.
“But it was also a bit of relief to know what was happening and at least then we could carry on. Because we had two young children, the thing was to take every day as it comes and be as normal as we could for them.
“As things get worse, you just have to adapt and carry on and try not to let it disrupt your lives.”
They moved back here two years ago with children Alfie, now four and Kia, aged six, who watched as Mik was able to walk Jodie down the aisle on their wedding day.
He went to Bideford College and boxed for Bideford ABC, as well as played football for Town under 16s. Later he worked for Brannam Pottery and then South Molton Recycle.
The onset of MND for Mik has been fairly slow, but last year he was rushed into intensive care and has since become dependant on the breathing machine 24 hours a day and confined to a chair or bed.
But a demonstration of the Tobii Eye Gaze computer system showed how it could transform his life.
With an inbuilt camera it tracks eye movement, allowing him to control a mouse and do all the things a normal computer can do, as well as work as a mobile phone, access the internet, even control his bed, television, Blu Ray player or anything that can be operated by infrared, as well as allow him to read and communicate if his speech is lost.
“It’s such an amazing piece of kit that changes peoples’ lives,” he said.
“If anything happened to me and I didn’t need it any more, it would be donated to the North and West Devon branch of the Motor Neurone Disease Association so it can be re-used and give someone else a chance.”
Jodie has set up a Facebook page called ‘Support for Mik (Michael Morgan)’ and is doing a sponsored walk from Bideford to Barnstaple on July 14, with 25 people already taking part.
There is prize bingo at Bideford Angling Club on July 19 and Mik’s mum Annie Allen with her colleagues at Claire’s Nursery in Newport are running a stall at the nursery Summer fete on August 3.
Plus, eight friends of the Morgans at the Sampsons Plantation estate where they live have so far ‘volunteered’ their husbands for a sponsored chest wax.
“It was nice to see him with the demonstration computer because he does get very frustrated – we have been together 11 years this year and have been through it all,” said Jodie.
“We just want to say thank you to everybody – people have been so kind and generous.”
Anyone who would like to join any of the events or make a donation towards Mik’s computer appeal can email Jodie on firstname.lastname@example.org or call 07706 905002.
* A new website has been set up to help Mik’s appeal fund - anyone who would like to donate can visit youcaring.com/support_for_mik