Norwich man's disease tragedy
PUBLISHED: 19:55 05 March 2011 | UPDATED: 19:55 05 March 2011
Archant Â© 2011
A Norwich man who was left heartbroken after both his mother and brother died of motor neurone disease is now battling the incurable condition himself.
The family tragedy has spurred Chris O’Flaherty to raise vital funds and awareness about the disease which has devastated his life.
Now in a poignant labour of love he is poised to take part in the Bupa Great North Run in his wheelchair.
Mr O’Flaherty, of Dereham Road, New Costessey, said the family’s case had “baffled” doctors and is very unusual.
His older brother Richard was the first to be diagnosed with the disease, which involves the progressive wasting of muscles, and was in his 20s when he died about nine years ago.
Their mother Patricia Birkett-Stubbs died about three years ago and was in her 50s. Both had an aggressive form of the disease.
Mr O’Flaherty, 33, has been told that he is suffering from a “slower” form and says he takes each day as it comes.
He is raising funds for the Motor Neurone Disease Association by taking part in the Bupa Great North Run with the help of friend Simon Peck, landlord of the White Horse pub in Chedgrave, near Loddon.
Mr Peck will help push Mr O’Flaherty in his wheelchair around the half-marathon course between Newcastle and South Shields on September 18.
Mr O’Flaherty is a regular at the White Horse and plays pool there. Both men went to Hobart High School in Loddon.
After enjoying a normal childhood with his family in the Chedgrave/Loddon area Mr O’Flaherty was in his 20s when he starting having problems with walking.
“I just dragged my feet and couldn’t lift them up for some reason,” he said.
“It has devastated my family and is very unusual.”
He added that he is “out-living the text books,” which suggest three to five years life expectancy, as he has had the disease for about eight years.
Mr O’Flaherty has recently lost a friend to the disease and said this coupled with losing his brother and mother was difficult to put into words.
“I take every day as it comes. It might not progress anymore. It is a blessing when I wake up each morning,” he said.
The Norwich and Waveney branch of the Motor Neurone Disease Association has been very supportive, part funding Mr O’Flaherty’s wheelchair and mobility vehicle.
Mr Peck, 37, has raised funds for charity through running before and the pair are looking to raise as much money as possible.
He said: “I want to support Chris. When he comes in here you see courage and determination. It makes you think there are other people like Chris who need help and support.
“Chris has got an incredibly strong character and is an incredibly strong person. A lot of people would sit at home thinking I am next, but Chris is not like that.”
To sponsor the pair go to www.justgiving.com/christopher-o-39-flaherty or call the pub on 01508 520250
The Motor Neurone Disease Association provides the following facts about the disease:
Motor Neurone Disease (MND) was first described by the French neurologist Jean-Martin Charcot in 1874.
The term Motor Neurone Disease, describes a group of related diseases, affecting the motor nerves or neurones in the brain and spinal cord, which pass messages to the muscles telling them what to do.
MND is a progressive neurodegenerative disease that attacks the upper and lower motor neurones.
Degeneration of the motor neurones leads to weakness and wasting of muscles, causing increasing loss of mobility in the limbs, and difficulties with speech, swallowing and breathing.
The muscles first affected tend to be those in the hands, feet and mouth, but this is dependent on which type of the disease is diagnosed.
Motor Neurone Disease can be extremely difficult to diagnose for several reasons:
It is a comparatively ‘rare’ disease.
The early symptoms can be quite slight, such as clumsiness, mild weakness or slightly slurred speech, all of which can be attributed to other reasons. It can be some time before someone feels it necessary to see his or her GP.
The disease affects each individual in a different way; there is no definitive symptom, which would immediately indicate diagnosis.
There is no test available to diagnose MND; it is a case of eliminating other potential conditions.
MND does not usually affect the senses or the bladder and bowel. It is not contagious.
The effects of MND can vary enormously from person to person, from the presenting symptoms, the rate and pattern of the disease progression to the length of survival time after diagnosis.