AUCKLAND, New Zealand / Northshore Times / May 6, 2010
By Sarah Coddington - North Shore Times
SIMON LEIGH is living on "bonus time"
but he is still determined to make the most of every day.
The Beach Haven resident was given 12 months to live back in September 2008 and jokes he is on bonus time.
Mr Leigh, 46, has emphysema that is caused by a genetic deficiency of a protein called alpha-1 antitrypsin. The protein protects the body from an enzyme that causes infection and without it body tissues, such as the lungs, can come under attack.
The onset of emphysema started back in 1998 when he experienced a severe shortness of breath attack while stripping wallpaper at home.
Mr Leigh ran his own IT consultancy business but is now confined to bed and permanently attached to an oxygen machine. He admits to being a smoker for 20 years.
Mr Leigh says he's "one decent dose of pneumonia away from the end".
He has separated from his wife Michelle but they remain on good terms and he has a flat attached to her home so he can spend precious time with their sons Dylan and Kieran.
Dylan, 12, often visits his father and they build Lego together and chat. Kieran, 15, comes down each night to check everything is okay before he goes to bed.
"They have lived with it most of their lives – they have always had a sick dad.
"They are normal kids which is good. I wouldn't want them to be upset but I don't know if they realise how much it will affect them when I'm gone," he says.
Helpers come in every day to help with daily routines like showering and tidying the house.
North Shore Hospice volunteers and staff have also been a great help, he says.
In particular he is grateful to his hospice counsellor and family support team leader Maxine Pye who has helped him and has family come to terms with his fate.
"I have had more than 10 years to come to terms with it. Sometimes you're in denial, sometimes you're angry, then accepting and then you switch back to denial," says Mr Leigh.
Once every few months he goes to hospice so his progress and medication can be monitored.
It comforts Mr Leigh to know hospice will be there for his family when he dies. [rc]
© 2010 Fairfax New Zealand Limited