Our Members - Their Stories

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

Pathway to home

18 June 2021
Melanie Louden

Trepidation turns to freedom and equal opportunities

Something as simple as a concrete path has helped ensure Daniel Bertinshaw can still be part of treasured family gatherings.
By Melanie Louden

A new path means Daniel Bertinshaw has the freedom to come and go from his mother’s house without assistance. Photos: Jackie Stewart

For Daniel Bertinshaw and his four siblings, the family home in Dunedin is the “nexus of the family”.

“The house is a family treasure really. The whole family just loves this house,” Daniel tells In Touch.

However, access to the house was difficult and dangerous for Daniel who uses a wheelchair so he sought help from the Bradley Jenkin Memorial Fund to address the situation.

Daniel, 41, has facioscapulohumeral muscular dystrophy and had been living in Auckland with his wife Camille Cowley.

But their struggle to find an accessible house, and a fall while navigating stairs at home, which resulted in a head injury for Daniel, prompted a shift back to Dunedin where their families live.

Daniel moved first in May 2019 and lived in the family home with his mum, Donna, and sister, Veronica, while the couple searched for a suitable rental.

The problem was the path from the road to his mother’s 115-year-old house was an old brick path, with steps and no handrail.

Over the years tree roots had lifted the bricks and made the path dangerously uneven. With age the bricks became harder to clean, making them slippery in the wet.

While Daniel was living with his mother he couldn’t get out of the house without someone helping him, or at all if it was wet.

“Someone would have to hold on gingerly as they helped me down the steps. Mum would have kittens every time I used that path.”

If Daniel was in his hand chair, someone would have to dismantle the chair, load it in the car, then assist him down to the car.

However, when the time came for Daniel to move out, returning to the family home where the close-knit family often gathers would have been difficult.

“I knew I wasn’t going to be living at mum’s forever, but I needed to make it accessible so that I could go over easily once I’d moved out.”

Daniel, a member of MDANZ Southern Regions, and Veronica agreed to cover the cost of putting a concrete path from the footpath to the front door of the house and Daniel applied to the Bradley Jenkin Memorial Fund which granted him $604.50 towards his contribution to the path.

Daniel and Camille eventually found a suitable rental property and in May 2020, just after the first lockdown, Camille joined her husband in Dunedin and they moved into their home the following month.

Seven weeks later the path at Donna’s house was completed and Daniel had a new-found freedom.

Leighton Griffiths from Griffiths Construction laid the path, and both Daniel and Donna are grateful for his efforts.

“He was really good at listening to the specific needs I have and delivered without any hassle.”

Daniel can now ride his power chair the five minutes from his new home to Donna’s house and the best part is he can turn up unannounced.

“That was a bit of a surprise for mum!”

Donna is delighted that a new path means her son Daniel Bertinshaw can drop into the family home unannounced.

Initially, Daniel didn’t realise the impact the ramp would have.

“But then I realised it was a relief to mum and to my wife. Before there was huge trepidation about me using the old path.”

The path puts Daniel on an “equal ability” to his siblings.

“I’m just the same as my siblings – I can turn up to mum’s any time. We’ve all got a key for the door.”

Daniel is very grateful to the Bradley Jenkin Memorial Fund for contributing to the path and recognising the benefit the path would have to him and his entire family.

“It’s nice to be able to overcome some of the limitations.”

Donna says watching her son use the old pathway “filled me with dread”.

“Even when it was dry, it was a difficult mission, requiring serious concentration, to help Daniel get safely down the path to the steps, then down the steps to the footpath, and lastly safely into the car.

“Because of accessibility issues, Daniel spent a long time in a lockdown of a different order.”

Donna remembers well the first time Daniel arrived unannounced.

“One sunny day there was a knock on the front door and I opened it to Daniel. He and his powered chair had easily made the trip up the hill from his place to ours. I couldn’t get over it.

“That Daniel could appear at my door when he wanted to was the greatest sign that the years of hardship were fading away for Daniel and Camille.”

Donna says the family home, built in 1906 as the manse for the local Baptist Church, is a treasure.

“We have special times when we get together.”

Donna says it means “everything, and not just to me,” that Daniel can still be part of family gatherings thanks to a simple path.

“The Sibs (as they call themselves) love being together. It’s wonderful that Daniel can motor up the hill when there’s a gathering.

“One day I’d like to have a path made through the hedge to the back yard so Daniel can enjoy outside times with everybody.”

- Camille and Daniel are now living in an accessible rental property while they prepare to build an accessible home on land they have owned for a number of years.


The Bradley Jenkin Memorial Fund

The Bradley Jenkin Memorial Fund helps MDANZ members with a neuromuscular condition receive funding for access opportunities and specialised resources that enable them to achieve freedom.

The fund has helped members purchase specialised sports equipment, participate in sporting events, it has contributed towards the cost of obtaining a mobility dog, provided mobility equipment, and assisted with career development such as university and course fees. 

<END>

This article was originally published in the Winter 2021 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]