The Wara siblings, back from left, Luke, Jessica, Unity and Jordan. Front from left, Jay and Caleb.
Unity Wara was 3 when her younger brother Jay was diagnosed with Duchenne Muscular Dystrophy, yet it was not until six years later, when he became wheelchair bound, that she realised the extent of his diagnosis.
Her musically gifted and quick witted brother's body was gradually deteriorating.
Four years later, the earth shattering news of Duchenne Muscular Dystrophy (DMD) hit the Wara family for a second time when Caleb, the second youngest of six siblings, was also diagnosed with the condition.
"Their lives were all about operations and wheelchairs, which they went into at about eight years old," said Paraparaumu born Unity, who now lives in New Plymouth, where she works as a school music and kapa haka teacher, and a music tutor.
A seasoned singer and performer, Unity took on the unfortunate role of singing at both of her brothers' funerals, after Jay passed away in 2006 aged 26 and Caleb seven years later, at 23.
Now, the mother and jazz band member has been invited to sing at a DMD fundraiser in Kapiti this month, being held for 4-year-old Harper Ahern.
Harper, who is an active young lover of sports and the outdoors, was unexpectedly diagnosed with DMD in October 2016. His family does not know how quickly and severely his condition will deteriorate.
As a result, they are raising funds to help cover the costs of his treatment, a wheelchair and activities for him to enjoy while he is still mobile.
Unity is among a collection of local artists and sponsors whose efforts will fuel Harper's Little Auction, taking place on Saturday, October 28 at Southward Car Museum, from 6.30pm.
Dion Ahern, Harper's father, went to school with Unity.
"I felt honoured to have been asked to sing in support of the family.
"Of course my heart also jumped with sadness knowing what the family will have to go through."
According to Muscular Dystrophy New Zealand (MDNZ), the term neuromuscular condition refers to conditions or diseases that impair the functioning of the muscles and their direct nervous system control.
Primarily, it results in muscle wastage and a progressive decline in strength, with symptoms that include muscle weakness, pain and fatigue, loss of muscular control and myoclonus (twitching or spasming).
Over time, serious complications in the areas of speaking, swallowing, breathing and heart function may be experienced.
"Jay was diagnosed with DMD by accident when he temporarily died on the operating table at age 2, while having surgery for grommets.
"It gave him brain damage, which resulted in autism.
"Caleb was diagnosed after he was born, after a bit of a medical misadventure as mum had been told she wasn't a carrier of DMD."
While DMD mostly only affects males, women are carriers of the gene.
Despite Unity being one of them, she has a certain chromosome that prevents the condition from being passed on, which was confirmed through costly medical tests conducted in Scotland.
Her younger sister Jessica does not carry the gene.
According to Unity, who performs in a band or as a solo act most weekends, Jay was pure, musical and funny.
"He could play the drum machine and beat box like a boss, and he could recite the entire Dire Straits collection. He said the most random things at the most inappropriate times, which made it even funnier.
"He loved everyone and his exit song was Don't Worry be Happy, which is the song he sang with my dad the night before he died from pneumonia."
Caleb, she said, was a lot quieter.
"He was shy but loved his music too, although more metal music, and him and Dad went on road trips to concerts, where he met Tiki Taane and the Slipknot singer.
"He loved to collect things like Hunger Games items and stuff from Lord of the Rings.
"Since Caleb wasn't autistic like Jay, he was very aware that he was going to have short life."
The hardest thing about DMD, Unity said, is the short life span.
"It was hard knowing my brothers wouldn't have relationships or couldn't go to the gym and do the normal everyday things we take for granted.
"I saw my parents endure things no parents should have to.
"Everything we did had to be based around wheelchairs and if went away, we had to stay at wheelchair accessible places and take vans.
"I watched my parents struggle with ACC and with getting funding for vans and beds and wheelchairs."
But, she said, with love and support her brothers had an amazing life.
"Jay lived 10 years longer than expected."
For Unity, singing at Harper's Little Auction this month will bring "great joy, as well as sadness"'.
"I believe my brothers are our driving force when chips get down.
"I think about them when I'm about to perform or when I'm going through hard times."
To purchase tickets to this month's event, visit Harper's Little Auction on Facebook or phone 027 23 006 0002.
