Harper Ahern, 5, was diagnoised with Duchenne Muscular Dystrophy last year.
Harper Ahern, 5, was diagnoised with Duchenne Muscular Dystrophy last year.
Harper Ahern pulls the zip up on his jacket before fitting his feet into his gumboots and running to brave the chill of his Gisborne backyard.
It is moments like this that his family holds on to, memories of their boy chasing his friends or kicking a ball - the usual activities a 5-year-old with a passion for soccer, bush walks and waterslides enjoys.
Paekakariki-born Harper, who was unexpectedly diagnosed with Duchenne Muscular Dystrophy (DMD) last year, is at the edge of a long-term battle with the severe neuromuscular disorder, which will cause his muscles to progressively waste away.
By the time he is 12, he will have most likely lost mobility and will require an electric wheelchair full-time.
"How quickly and severely Harper's condition deteriorates, we don't yet know," said his aunty Emma Ahern, of Paraparaumu, who has organised a Kapiti-based fundraiser for her nephew.
"We want to make sure he can experience as many exciting and new activities as possible before things get much harder for him."
Harper's Little Art Auction fundraiser will take place at Southward Car Museum this October, and raise money to help with his future mobility requirements, including specialist wheelchairs and mobility vehicles.
"We're also opening a savings account for Harper to help support his independence when he's older, including tertiary education needs."
Funds will also help with travel costs for his ongoing but partially-funded specialist appointments, as well as alternative steroid and supplement options not funded in New Zealand.
"While there's plenty of research and trials in place for DMD, there's currently no cure for the disease and primary treatment consists of steroids and physical therapy."
The treatment, she said, worked to prolong the onset of the disease.
The Saturday, October 28 event, from 6.30pm to 10pm, will include nibbles and entertainment, with an artwork auction comprising work from a range of New Zealand artists.
As well as Paraparaumu actor and comedian Cohen Holloway on board as MC, local sponsors Tuatara Brewery, Kapiti Cheese and Copseford Flowers have offered their support.
The event will also support other muscular dystrophy sufferers across the country, through a donation to the Muscular Dystrophy Association of New Zealand (MDANZ).
At the moment, according to Emma, Harper struggles to run, jump, balance and walk for long lengths of time but, despite battling to keep up with his friends in the playground, he never stops trying.
His dreams and needs remain similar to other boys his age, as he practises his surfing skills to be like his father Dion Ahern, an ex-pro surfer, who met Harper's mother Trish at Kapiti College.
"And, of course, he loves getting up to mischief."
Harper and his dad Dion Ahern with a snapper.
For now, while Harper is still mobile, his family wants to give him fun new experiences, including horse-riding, swimming lessons and theme parks.
"We want to give him the things that will be much more difficult for him in the future."
Harper's father said the diagnosis of the genetic disease was an "absolute blindside", especially considering neither families had any history of muscular dystrophy.
"Sure, he couldn't run as fast as other kids, jump or balance well - but nothing we thought was abnormal.
"When we found out, man our world just went upside down, from shock and denial to hope, confusion, anger, sadness and panic.
"It really hurts that Harper's chances of living to his 30s are not great.
"At the moment our focus is around managing his condition."
The family was learning to live a lot more in the present.
Harper, with his mother Trish and sister Mia, catches a fish.
"The first six months was really tough, and while we're still having a few heavy days, we're managing ourselves better and have amazing, loving support from our family and friends.
"The main thing we want is for Harper to live a happy and meaningful life."
For more information visit Harper's Little Art Auction on Facebook or to purchase tickets, visit www.eventfinda.co.nz/2017/harpers-little-art-auction/paraparaumu
