Book depicts life with muscular dystrophy

By Zaryd Wilson

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TALK TO ME: Niki Wright-Jackman is happy to dispel myths about MD. PHOTO/STUART MUNRO
TALK TO ME: Niki Wright-Jackman is happy to dispel myths about MD. PHOTO/STUART MUNRO

Don't assume anything about Niki Wright-Jackman. Just ask.

The Whanganui woman is one of 17 whose story is published in Beyond DNA; Stories of Challenge and Triumph, a book published by the Muscular Dystrophy Association (MDA).

The book was launched last week and features people talking about living with a neuromuscular condition. It covers topics such as circumstances surrounding diagnosis, prejudice at school or in the workplace and access to healthcare and funding.

In the book, Mrs Wright-Jackman talks about her experience with pregnancy as someone with spinal muscular atrophy.

"It was actually quite a challenging and a difficult time," Mrs Wright-Jackman told the Chronicle.

"Not so much because I am the way I am but because of other people's attitudes.

"The medical profession really didn't know what to do with me. I didn't fit into the box of a regular pregnancy."

She got a lot of negative comments and cases of people being reluctant to deal with someone with her condition.

Midwives not wanting to offer the personal care she needed and that she would have got if she was at home was one example she talked about in the book.

"The book was a great opportunity to share that because I was incredibly lonely during that time.

"It just seemed like no one in the whole of New Zealand had had a disability and had a baby."

Mrs Wright-Jackman's child is now a healthy 5-year-old who has just started school.

She hoped the book would increase people's understanding of people who live with neuromuscular conditions.

"I think it's just about awareness and asking us how can you help. It's not about putting up barriers," she said.

"I suppose it's better to communicate or to ask than assume. It's very hard to say don't judge a book by its cover because what you see is easy to judge.

"But I'd rather you talk to me than about me."

The book was launched as part of the MDA's Week of Freedom appeal to raise both funds and awareness.

Neuromuscular condition is an umbrella term which describes a variety of progressive muscle disorders, many of which are genetic and therefore impact on families.

-Beyond DNA; Stories of Challenge and Triumph is selling for $25 with all proceeds going towards the MDA. To buy a copy visit www.mda.org.nz or email info@mda.org.nz.

To make an immediate $3 dollar donation, text 2386.

- Wanganui Chronicle

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