Physical symptoms can include delayed motor milestones, a waddling gait, enlarged calf muscles, trouble rising from the floor, and eventually heart and breathing complications.
For Wilson, who lives in Gate Pā, leaving her house and returning to her routine of doctor’s appointments, shopping, and Sunday church services requires modifications to her mobility van — upgrades she needs funding for.
Lynn Phillips, 71, has arthritis and struggles to manoeuvre daughter Michelle’s power chair.
Her grandmother, father, uncle and cousin all had the disease.
Wilson’s 71‑year‑old mother, Lynn Phillips, said her daughter’s condition continued to deteriorate.
Ambulances have visited Wilson’s independent disability unit twice in three weeks due to medical issues.
Wilson has only 20% lung capacity and relies on morphine to help with her breathing, making even simple tasks — such as going to the bathroom — extremely difficult.
In one instance, Phillips said Wilson cried all the way to the doctor because she was struggling so much to breathe.
“It’s horrible for her,” Phillips said.
To get around, Wilson uses a power chair — an electric wheelchair she can control independently.
When travelling, the chair must be manually secured inside her mobility van using seatbelt straps and hooks.
Michelle’s power chair being strapped into her mobility van.
Phillips used to secure the chair for her daughter, but arthritis in her hands and back now prevents her from doing the physically demanding task.
The pair recently made a trip to Bethlehem and Tauriko, meaning Phillips had to secure the chair for the journey, unhook it at their first stop, repeat the process for the next location, and then again for the drive home — six physically straining repetitions in a single outing.
“It took me five to 10 minutes each time,” Phillips said.
“My back was absolutely killing me. I want Michelle to be comfortable and not worry about me and my back.”
The hooks in Michelle’s mobility van that lock her power chair into place.
Wilson said she refuses to travel in the van while her mother’s health was at risk.
She previously travelled by car, but getting in and out eventually became too difficult.
The solution to their problem is an automatic locking system — the EZ Lock Docking System — which costs between $2000 and $5000.
The system would automatically secure Wilson’s power chair when she rolls into the van after being lifted by her accessibility hoist.
Wilson said she used to go shopping with friends but can no longer do her own groceries or attend church. She once went out two to three times a week.
“It’s confining me to my house, and I don’t want to be stuck in a box,” she said.
Funding from Lotto helped supply Wilson’s mobility van, but the funding could only be accessed every seven years.
Wilson received her van three years ago, meaning she must wait another four years before she can apply again.
So Wilson and Phillips have taken matters into their own hands by launching a Givealittle page to raise money for the EZ Lock Docking System.
“We don’t want to wait three or six months. We want Michelle to enjoy life now, while she can,” Phillips said.
“The automatic locking system will improve her quality of life.”
Bijou Johnson is a multimedia journalist based in the Bay of Plenty. A passionate writer and reader, she grew up in Tauranga and developed a love for journalism while exploring various disciplines at university. She holds a Bachelor of Arts in Classical Studies from Massey University.