Time left used to help others

Paul and Tracy Whiston. Photo / Doug Sherring

Vivacious Tracy Whiston had it all: a loving husband, three great kids and a positive outlook.

Now, the 37-year-old is battling motor neurone disease (MND), which has no known cure. She may only have a handful of years to live.

But the Auckland woman is using the time she has left to help others with the disease.

Tracy has set up a trust to raise money for families affected by the debilitating disease and has inspired a wave of fundraising efforts at St Mary's Catholic School in Ellerslie.

She is now in a wheelchair and communicates via an iPad - an electronic voice speaks the words she types.

"Two months ago I was still walking all day. It is too fast," she said. The disease has no known cause, no cure and sufferers have a likely life expectancy of two to four years from diagnosis.

Originally from Canada, the nurse and midwife noticed in December that she was tired and her speech had begun to slur. After six weeks of tests, she was diagnosed with MND.

Her courage comes from her children: Saskia, 10; Lexie, 8, and Blake, 6.

"When you have children you have to get up. It's amazing what you can do. I still had to get out of bed and make lunches."

Husband Paul said they had not yet told the children how serious their mother's condition was.

"The advice we had was to explain MND to the children but to stay away from the outcomes because it's too much. We are waiting until they ask," he said. "Blake, the youngest, told me one day that he felt like he was having a heart attack because he thought I might die," said Tracy. "The disease is sh** but I can't change the illness."

"But you can change how you deal with it," said Paul. "Tracy calls it her gift. Weird, eh? It has allowed her to meet people and have experiences she would not otherwise have had. If Tracy wasn't so positive we would all be a mess."

When she heard the news, Saskia's teacher, Caroline Bush, wanted to donate money to the trust by running in the New York Marathon on November 7.

A group of mothers are training for the Mission Bay Panasonic Tri Series on December 5, with all sponsorship donations going to the trust.

Paul said 70 people from the Ellerslie community were on a cooking roster for the family and friends were helping to look after the children and sitting with Tracy while he was at work.

One of their crucial supporters has been the MND Association.

The association has no government funding and with just seven part-time field workers only people in the main centres have access to support.

Tracy and her family are raising money to "fund a family" which will provide specialist support for people in rural areas through the MND Association and the Tracy Whiston MND Charitable Trust.

CAUSE AND CURE UNKNOWN

Motor neurone disease (MND) is a neurological condition that causes the progressive degeneration of nerve cells in the brain and spinal cord.

It has no known cause and is invariably fatal, with a likely life expectancy of two to four years from diagnosis.

It can cause muscle spasms and a progressive wasting and weakness of muscles. As the condition progresses, sufferers may be unable to walk, speak, use their arms and hands or hold up their head.

MND starts generally between ages 40 and 60.

Support Tracy Whiston and others with MND by internet banking to Tracy Whiston MND Charitable Trust account no: 12-3198-0054517-00