Much-loved teacher and counsellor, Laurie Hill, loses battle with Pompe Disease
A Taranaki man who fought for life-extending drugs for sufferers of a rare disease has died.
Laurence "Laurie" James Maxwell Hill died in New Plymouth on December 30, aged 54.
Hill suffered from the rare Pompe Disease, which is caused by an enzyme deficiency that causes muscle damage.
He was diagnosed with the disease after a near-fatal tractor crash while farming in Waikato in 1990. After the crash he retrained as a teacher and taught at Woodleigh Primary and then Mimi School, near Urenui, before spending eight years as deputy principal at Marfell School.
While at Mimi School, Hill was at the forefront of what was then called discovery learning, long time friend Mike Pillette said.
"That is child centred learning. He perfected that at Mimi School when he was sole charge. The [Education] Ministry asked him to go around the country and roll it out, but he didn't want to."
At his funeral on Wednesday, which was attended by a number of former students, it was said Hill's teaching philosophy was not based on facts and figures but on love.
Hill had a passion for what he was doing in education, especially in educating boys, Pillette said.
"And children from disadvantaged backgrounds - he was able to connect to those kids. He was deputy principal at Marfell and he made a big difference at that school."
Hill was a much-loved teacher and also a gifted sports coach and an integral member of the New Plymouth Ravens inline hockey club.
When Hill's health got worse he gave up teaching, but didn't give up learning. He went to Waikato and completed a Masters in Counselling before coming back to New Plymouth and working for Tu Tama Wahine o Taranaki, Pillette said.
"He was 6ft 9. He was charismatic. He was determined. He was stubborn as a mule sometimes. Very intelligent."
Hill was the second person in New Zealand to be diagnosed with Pompe Disease, but there are now about 10 people, Pillette said.
"He never let it stop him from doing what he was passionate about. He knew it was inevitable, that it would kill him, but it didn't stop him doing what he wanted to do."
Hill was a founding member of the New Zealand Pompe Disease Association and spent a lot of time petitioning the government and Pharmac trying to get medication to help sufferers in New Zealand, he said.
He was even turned away from parliament by the prime minister's security guards on one occasion when he went to Wellington to appeal to John Key for help.
Pillette said Hill was sponsored and went to a conference in Germany with fellow sufferer Freda Evans, who was at his funeral, to find out about current treatments for the disease.
"They made a pact to come back and see if they could make a difference and make people aware this disease exists and there are people suffering and they need extra help. The powers that be in this country didn't listen."
More recently Hill went to Australia to take part in trial, which wasn't a cure, but slowed the progress of the disease, Pillette said.
"But missed his family too much, so came back."
Hill had two sons and two grandchildren, Pillette said.
"They were the love of his life really. They kept him going. He's an amazing man."