Siblings defy the odds to graduate

Siblings share rare disease and now degrees

JO MOIR
Last updated 05:00 13/05/2014
Siblings
DOUBLE DEGREES: Siblings Therese and Joseph Boon, who both suffer from a rare genetic disease, graduate from Victoria University today with BA degrees.

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A brother and sister who share a rare genetic disease have beaten the odds to graduate from Victoria University.

Now they have vowed to beat their disability by walking in today's graduation parade and when they take the stage to accept their degrees.

Joseph and Therese Boon have Friedreich's ataxia, a genetically inherited disease that affects the nervous system and restricts their motor skills, from walking to note-taking.

Around the hilly campus they have to use wheelchairs, but they plan to walk in today's parade with the help of friends, and to make it unaided across the stage.

Joseph, 23, said the knowledge that his sister, 21, was coping with the same condition had helped keep him on track to complete his degree.

"It got to the point where I really couldn't afford those kind of thoughts about quitting, and knowing that I needed to get a degree to make it in the world helped."

Joseph completed film and political science majors and has aspirations to enter politics, "if only to set up the infrastructure to make it easier for other people with disabilities".

He said access for people with disabilities at university had improved while he had been there.

"There was one day where an attractive woman was waiting for the same lift as me, which was well known to have fast closing doors. Being the gentleman, I let her go first and then the doors closed on me and knocked me over and she had to help me up.

"That certainly knocked the wind out of my sails that day, but the doors got fixed so it worked out."

Therese and their older brother James were diagnosed in 2008 after suffering unexplained falls, difficulty with sports and with carrying things. Their parents were both carriers of the disease, and the risk of passing it on is generally considered to be about one in four.

However, three out of their five children have inherited it.

Therese said she had been lucky to make friends who helped her out at university - the same friends who will help her and Joseph walk in today's parade.

She will graduate with film and English literature majors. "I'm nervous but excited about graduating, and I'm so happy I'm doing it with Joseph, and the entire family can be there to support us."

More than 2220 students will graduate at six ceremonies this week.

Two honorary doctorates will be awarded during the week - The Luminaries author Eleanor Catton will receive one in literature, and international law, and human rights and criminal law scholar Professor Roger Clark will receive an honorary doctor of laws.

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- The Dominion Post

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