Paying it forward: Sight, mobility go but dad's grit remains

The Herald speaks with Kiwis who have been on the edge of death, had their world tipped upside down, overcome their darkest moments and are now paying it forward.

A Kiwi father who lost the use of his legs, his sight and the strength in his right arm is swimming across the Waitemata Harbour to raise $150,000 towards research of his condition.

Mark Taylor, 46, lives with a degenerative disease called neurosarcoidosis — a condition he was diagnosed with 16 years ago.

"I was out chopping wood with my brother when I went to rub sweat from my eye and realised I couldn't see out of the right eye," Taylor told the Herald.

Sadly, the father-of-three's vision didn't get clearer. Instead, the pain he had been feeling behind his eyes for months got worse.

After being admitted to Auckland City Hospital in early 2002 he was diagnosed with optic neuritis — swelling of the optic nerve — a similar symptom in MS.

Later that year, he lost complete sight in his left eye and three years after that his vision was impaired in the other. By the age of 35 he became partially paralysed and entered a rehabilitation facility to learn to walk again.

The next year he was diagnosed with a rare form of neurosarcoidosis that affects one in 80 million. Struggling to walk and relying on a wheelchair took a toll on his social and professional life and he had to deal with discrimination daily. Yet he refuses to let his condition define him.

"It's my eldest daughter who keeps me exercising, she's a fitness freak," he said.
On top of a 100km indoor rowing challenge and eight hours of continuous exercise, which he has already conquered, he plans to swim 1km on April 6 under the Auckland Harbour Bridge.

"I mentioned it to my boss and he announced it to the whole company, so now I'm locked in. I thought if I'm going to do it let's make it worthwhile," he said.

Helping prevent others from suffering neurological disabilities by raising money for research was his motivation. His Givealittle page has already raised nearly $100,000.

The Neurological Foundation, which Taylor's money will go towards, has funded world-class New Zealand scientists and clinicians to conduct research and further education.

This has led to ground-breaking discoveries in their search for treatments and cures for the more than 1100 neurological disorders affecting one in five New Zealanders over their lifetime.