Identical twins Mina and Lydiarose Ardern live with daily pain due to Lowry-Wood syndrome. There are no painkillers, no treatment and no cure for the condition but their positive outlook on life keeps them on track. Feature writer Molly Lee talks to the twins about their illnesses
Climbing trees, jumping off walls and hanging off monkey bars are common ways children dislocate or break their bones. They are sent home with a wet paper towel from school and put in a coloured cast for their friends to sign. But for identical twins, Mina and Lydiarose Ardern, they are used to this type of pain.
It’s their daily life. It has been their life since they were born.
They’ve lost count of the number of times they visited the hospital. They don’t go now. There’s nothing the specialists can do for them.
Mina and Lydiarose, now 25, live with a rare genetic condition called Lowry-Wood Syndrome (LWS), which means all their bones are either misshapen or dislocated. They’ve lived with the ailment since birth.
It took two years for them to get diagnosed with LWS. Although they finally had an answer to all their pain, it provided no comfort or assurance.
LWS is an incredibly rare condition. There are fewer than 10 cases in medical literature, with the disorder only present in twins. It’s not just rare – it’s hard to diagnose. Google provided very little for the Ardern family when the twins were first diagnosed and the doctors weren’t much better.
Lowry-Woods Syndrome isn’t the only medical condition and disability Mina and Lydiarose must live with – they have mild Cerebral Palsy due to their premature birth and, also, Scoliosis.
It feels like a constant battle, says Mina, from her home in London.
“The two together [Cerebral Palsy and LWS] isn’t the best because one is muscle, and one is bone. So, it feels like my body is fighting itself,” says Mina, whose pain threshold is so high due to the ongoing hardships she lives with.
Although daily living is difficult for Mina and Lydiarose, mum, Amanda Jane Ardern, is their main supporter. Amanda became a first-time mum at 27-years-old to twin girls and experienced a range of emotions when her beloved toddlers were diagnosed with this life-changing condition. The twins are the only ones with a disability in the family.
“I felt let down, disappointed and even resentful of my own body, but sadly it was all out of my control,” says Amanda, the twins’ main carer. “A rare disability comes with so many unanswered questions, still even today.”
There is no cure or treatment for LWS other than steroids for extreme pain. It’s just something the twins must live with.
Despite the lack of support for her children, Amanda made sure her daughters’ disabilities did not define them and their opportunities. Dance classes, swimming lessons and horse riding are some of the childhood activities the girls grew up loving.
“When I was younger, I didn’t really see myself as disabled,” says Mina with a chuckle. “And then at secondary school, I woke up one day and was like, oh yeah, I’m disabled.”
She taught the twins to be as physically independent and optimistic as possible. It helped because, at an early age, the condition wasn’t as severe and the twins were more mobile.
Living with this incredibly rare condition is a daily challenge, says Lydiarose. She found it hard to begin with.
“I tell myself: ‘Things are going to be different and difficult, and you are going to go through situations in life where you feel lonely, angry, maybe frustrated – but there’s also some really good times, embrace it all’.”
She wishes she had told this simple mantra to her younger self, she sighs.
Lydiarose’s first real physical challenge was when she was eight years old. Her left kneecap slipped out of its joint. The pain was excruciating and the recovery, still, is ongoing. She struggled to remain positive.
“It truly floored me. I did become quite withdrawn and gave up on a few of my passions,” Lydiarose says, with her left kneecap still dislocated.
Both Mina and Lydiarose have a love for fitness and the gym. Mina first started going to the gym as a teenager, but when she did, there were no other disabled gym-goers. There was nobody else in a wheelchair. Everyone who was working out were able-bodied. This is when she knew she wanted to become a coach to show that disabled people can work out, too.
The twins have applied to complete the London Marathon next year. “I’ve always watched it on the telly and joked that one day we’re going to do that,” says Mina, with a laugh. “Hopefully we will next year.”
“Staying active is the best thing we can truly do,” says Lydiarose, who became a full-time wheelchair user in the summer of 2023. On Monday, May 6, 2024, Lydiarose competed in her first Hyrox competition after vigorous gym training. The fitness event is for everyone, not just elite athletes.
Mina’s love for CrossFit (a form of strength workout) flourished due to the sense of community which embraces anyone and everyone. After just passing her Personal Training course, Mina hopes to create her own inclusive gym community. There are many new adaptations to allow disabled people to use gym equipment, which Mina is keen to encourage.
Not only are there adaptations in the gym, but there are also improvements in general society to make life easier for those with a disability. “When you’re born with a disability, you’re used to adapting to things,” Mina says.
Although Mina and Lydiarose have found their own ways to adapt to living in London, technology is constantly advancing. This means new adapted apps are slowly improving travel experiences for the disabled community. Apps such as Passenger Assistance and AccessAble provide useful information to help people with different disabilities travel freely.
As identical twins with the same disability, Mina and Lydiarose have been a constant and important support for each other. They have even found out that they mirror each other. Mina’s right side of her body is more painful, whereas Lydiarose’s is her left.
“It’s all I’ve ever known to be a twin, so I’d say it’s a positive thing,” says Lydiarose, who can’t imagine a life without Mina. “We’re not similar in everything, that’s for sure, but we always support one another.”
Follow Lydiarose on Instagram – @lyds_fitness
Follow Mina on Instagram – @minabeefit
