Challenge and triumph shared
An inspiring collection of true stories documenting life with a neuromuscular condition has been released.
Beyond DNA, Stories of Challenge and Triumph was launched as part of the Muscular Dystrophy Association (MDA) National Appeal, and will raise awareness and funds for the cause.
Authored by Kiwis whose lives have been affected by muscular dystrophy, the collection serves as a platform for those living with the condition.
Denise Ganley was diagnosed with muscular dystrophy at 18, but it wasn’t until 19 years later she discovered it was limb-girdle muscular dystrophy type 2A, also known as calpainopathy.
Ganley says she was the first person in New Zealand to be diagnosed with the extremely rare genetic condition, of which both of her parents carried the recessive gene.
Now 46, Ganley has a partner and two daughters aged 13 and 17.
Her story is one of 17 shared in the collection.
‘‘There’s not a lot known about muscular dystrophy so it was really good to be able to participate in something that hopefully adds to awareness about the condition,’’ she says.
A progressive condition, Ganley says difficulty with movement began at a young age.
‘‘It started with things like being terrible at PE at school. I couldn’t run very well. It then progressed to the point where it was hard to walk up and down stairs and hills, and hard getting out of chairs,’’ she says.
Ganley has been in a power wheelchair full time for around 13 years, and in the last three years lost the ability to walk or stand independently.
She says the positive messages within the collection have a motivational appeal.
‘‘It’s interesting reading about challenges people have had and how they’ve overcome them,’’ she says.
An information office manager at Muscular Dystrophy Northern, Ganley has met many talented, inspiring people diagnosed with the condition.
‘‘One person felt because they had the condition, it motivated them to do more, and they achieved more in their life because the extra challenges made them do more,’’ she says.
Visit mda.org.nz to buy a copy of Beyond DNA, Stories of Challenge and Triumph and support the MDA.