Our Members - Their Stories

MDANZ members share their personal stories of living with a Muscular Dystrophy condition. 

Lighting up the world

18 December 2020
Melanie Louden

Aaron Collins has been bringing joy to his Palmerston North community for the past 15 years with huge synchronised Christmas light and music displays outside his home. And he’s not letting the pandemic stop him from doing the same thing this year.

By Melanie Louden

Aaron Collins, pictured with his brother Nathan, left, and parents Graeme and Anela, spends six months of the year on the computer sequencing a Christmas light display at his home.    Family photo: James Collinson

Aaron Collins’ fascination with technology, cables, wires, computers and all things electrical began early.    

As a youngster he was delighted to receive an extension cord for his fifth birthday, but it was a trip to visit an uncle in Australia as a 9-year-old that sparked his love of Christmas lights. 

Aaron’s uncle had a few lights up around his house, and the young boy was fascinated by them, so much so that when the family got home, he insisted they have lights of their own.    

“We put up a few fairy lights,” says Aaron’s mum Anela Collins. “I wanted them in the back yard so I could see them, but Aaron wanted them out the front.” 

The rest, as they say, is history.    

Aaron, 31, has Duchenne muscular dystrophy (DMD), and has been on a ventilator since he was 16 years old. 

As a young adult, Aaron started buying his own lights and “the collection just built up”.    

He’s now been creating large Christmas light displays outside his home for his Palmerston North community to enjoy for the past 15 years. 

He coordinates the display of synchronised lights and music via computer from his bed, while a small team of helpers, including   Anela, executes his vision. A neighbour provides the speakers and wires them up.    

“It used to take a weekend to put the lights up. Now it takes three months. We start in September,”   Anela says. 

Aaron spends six months of the year on the computer sequencing the display, buying new lights and organising his helpers.    

While they’ve never counted how many people have visited their home each festive season, Aaron guesses it would be a “couple of hundred”. 

While Aaron can’t join the revellers very often when he is able to get   up he enjoys seeing the joy the lights bring to people. Otherwise Anela goes outside with her phone and Skypes Aaron so he can still see people’s reactions. 

“People come in and laugh and smile, and it makes Aaron feel good,” Anela says. “It’s worth all the hard work.” 

She says her son definitely has a love of technology and computers and putting these displays together is “a challenge for him”. 

He sources most of his lights from America, buying them in January when they are on sale.    

Aaron’s collection now stands at 150 sets of lights, and his favourite display is the mega tree – a cone shaped display that initially looked like a tepee until he bought a star to go on the top.    

Aaron’s condition was picked up when he was   three years old after one of his kindergarten teachers pointed out to Anela and her husband Graeme that the youngster avoided stairs, and had trouble getting up off the floor.    

Doctors' appointments and testing confirmed Aaron had DMD. Testing also confirmed his younger brother Nathan had the condition.    

Well prepared for Covid-19 

The Collins family say they were mentally well prepared for the impact Covid-19 was likely to have on society, but it didn’t make adjusting to lockdown any easier. 

“Nathan has a degree in microbiology, so he knew from the early reports in December that the virus was going to be serious,” Anela says. “He didn't cause us to panic, but his knowledge of how viruses work was helpful.” 

She says they were anxious as the country went into lockdown. 

“It was quite a rush to get organised especially with our caregivers. It was hard to get supplies of hand sanitiser and masks.” 

The family normally has nine caregivers, but one of them went back to India and another was stood down because she also worked at the hospital.    

“Even though we were down   to   two caregivers everybody helped out and we got through it really well.” 

Another stressful task was getting groceries – at one point Aaron stayed up until 1am to get a delivery slot.    

“We felt it was too risky to go to the supermarket.” 

During lockdown the Collins’ were also coping with Graeme’s mother’s struggle with cancer, and her passing in August.    

But amongst the anxiety and sadness, there were positives for the family – there were no appointments to rush to, Graeme was home all the time and could help more with the boys, it was a restful time for them, and they could attend church online. 

For now they are simply enjoying sharing Christmas with their community in the brightest way possible. 

* This story was originally published in the Summer 2020 edition of In Touch magazine. 

 

For more information please contact:   
Melanie Louden 
Communications and Marketing Advisor 
Muscular Dystrophy Association of New Zealand 
027 509 8774 
[email protected]