Jansje Strydom, a Waikato social worker, walked the Great Wall of China to help raise funds for a free counselling service.
At age 13, a Waikato girl was told by doctors she could end up in a wheelchair because of a rare genetic condition.
But at 25, Jansje Strydom has proven predictions wrong and walked the Great Wall of China to help raise funds for a free mental health service for youth.
The walk was part of the Brighter Future Challenge to support the work of Barnardos Aotearoa’s 0800 What’s Up free counselling helpline.
Nationwide, the challenge raised almost $40,000.
Strydom, a Barnardos social worker, told the Waikato Herald taking part in the fundraiser and walking the Great Wall had been a “personal” goal.
“I really wanted to do this challenge, not only for myself, but for the kids who just need someone to talk to.”
She said the helpline was an “underappreciated resource” and one that helped her during her diagnosis, so doing the fundraising trek for this felt even better.
Strydom has Myotonia congenita Becker, which affects her muscles, balance, and mobility.
It’s a physical disability making her “weaker than the average person”.
Before she was diagnosed, when she walked, she’d “waddle like a penguin” and had sudden muscle stiffness like “fainting goats”.
With medication, she can now stand up without falling straight back down, walk normally, and even use her arms – things she once struggled with.
As Strydom reflects on her life before diagnosis, she remembers visiting doctors “periodically” at age 4.
After walking or getting up from a chair, she couldn’t bend her knees. She had to stand still before walking after getting up, otherwise her legs “would give out underneath me”.
“I’d almost be waddling like a penguin.”
At primary school, things were “really hard” for her.
Her muscles tired quickly, she struggled with writing, and she developed double vision. She’d verbally answer questions, though.
“I was the weird kid.”
Things worsened at age 9, when stiffness spread to her arms. She had broken bones because she couldn’t extend her arms out or bend them.
Her body would just go stiff, comparing the “weird sensation” to feeling like “fainting goats”.
Still undiagnosed, she went to high school aware of needing extra learning support; however, she found it difficult to convey that to teachers.
Strydom said she had a “hidden disability” and often needed to speak up because people couldn’t see what was going on with her.
She claimed people gave her a hard time and called her “attention-seeking”.
“I [felt] crazy.”
What made it harder was going from a small school where people knew of her condition to going to a “massive” school and having to explain it again.
She didn’t want anyone knowing about it any more, because she feared being “labelled again as the attention seeker”.
“Teenagers suck when they find out someone’s different.”
After almost nine years, she was diagnosed at 13.
“I didn’t feel crazy any more.”
But that came with struggles, such as being told she’d never be able to drive and could end up in a wheelchair in the future.
She defied all odds, and with medication, she drives and no longer waddles when walking.
She’s more confident now since advocating for herself.
On her own, she accessed a helpline at 13, which helped during her diagnosis.
“I felt heard, like I could just vent about what I was going through.”
This is why she now dedicates herself as a social worker, helping other youth to advocate for themselves.
The Great Wall walk was a “personal” goal.
“I really wanted to do this challenge, not only for myself, but for the kids who just need someone to talk to.
“I know what it’s like for my voice not to be heard. You have a voice, and it’s important that you use it.”
According to Miriam Rodrigues, the neurogenetic research lead at Health New Zealand, there is no cure for Myotonia congenita Becker (Becker’s Disease).
It’s a “rare” muscle condition, and affected people find it difficult to relax their skeletal muscles after moving intentionally.
Rodrigues said it was caused by a gene coding for calcium channels in muscle.
“People with Becker’s ... have inherited two faulty copies of the calcium-channel gene CLCN1 – one copy from mum and one copy from dad."
It leaves them with “no properly working copies of this important gene”.
Affected people can have issues eating, with choking and reflux, along with frequent falls, stiffness, and muscle weakness.
While there is no cure, it can be managed with exercise, physiotherapy, and medication.
Malisha Kumar is a multimedia journalist based in Hamilton. She joined the Waikato Herald in 2023 after working for Radio 1XX in Whakatāne.