Mum of two trapped in body of 60-year-old travelled 6500km to reverse rare muscle-wasting disease

Mum of two trapped in body of 60-year-old travelled 6500km to reverse rare muscle-wasting disease
  • PublishedJune 10, 2024

‘I had a young family and I just wanted to be the best mum I could for my kids.’

Samantha Lenik was 39 when her body was likened to that of a 60-year-old.

The mum-of-two was trapped in the body of an older woman and she was deteriorating — quickly.

She was told there was nothing she could do but enjoy what life she had left with her family.

The mum could barely comprehend what the doctors were telling her.

She had always led a healthy and active lifestyle and now she felt like her body was wasting away before her eyes.

“I could feel myself declining,” Samantha tells 7Life of her rare genetic condition, Pompe disease, which causes muscle weakness.

“I was slower on my feet and struggling to breathe.

“I had a young family and I just wanted to be the best mum I could for my kids.”

Despite the Kiwi being told there was no hope in slowing the progression of her condition, she couldn’t sit back and do nothing.

Instead, with the help of some incredible specialists in Adelaide, Samantha has defied the odds and, now with two teenagers, she says her legs have done more than just keep her up.

After giving birth to her first baby, Samantha was determined to get her pre-pregnancy body back.

The active new mum threw herself into daily gym, Pilates and aerobics sessions, and fuelled her body with all the ‘right’ foods.

Despite consistent exercise and a perfectly balanced diet, Samantha was still feeling sluggish.

She struggled to catch her breath, would occasionally fall over and was constantly feeling exhausted.

The mum continuously shared her concerns with doctors who couldn’t uncover the cause of her mysterious symptoms.

Samantha, pictured here with her family, says her Pompe diagnosis hasn’t held her back.

A few years later, with her husband working in Defence, they were posted to the UK, where Samantha continued her health kick — to no avail.

So she headed to a physiotherapist to see if some muscle release would help.

Her physio didn’t believe the mum was suffering from muscle tightness — she suspected something much more sinister.

“She basically told me I was working too hard,” Samantha reveals, adding she wasn’t seeing any results from her strenuous workouts.

“She said I had the muscle tone of a 60-year-old, and I was 39.”

Armed with this information, Samantha went back to the doctor and had a series of tests.

Finally, after a six-year search for answers, and moving back to New Zealand, a blood spot test picked up on Pompe disease — a progressive muscle weakness condition.

Samantha did exactly what she was told not to do, turning to Google for answers.

“It said that it was a chronic life-threatening disease and children (with it) don’t live very long,” she says.

The mum wants more treatment options to be available for New Zealanders.

Specialists advised the mum to “live life, enjoy life” and to spend time with her family while she could.

Although there was treatment available overseas, which could help slow the disease, Samantha couldn’t access it in NZ.

For three years, she watched helplessly as her body slowly deteriorated.

She tried to continue her active lifestyle, but each day was made harder by her weakening muscles.

Until one day — with the help of a patient advocacy program, NZ specialists, a team of specialists in South Australia and Samantha’s own drive to gain back control of her body — she was accepted into a clinical trial in Adelaide.

Every fortnight, on a Tuesday, she would board a flight from NZ bound for the South Australian capital.

And for four days, she would have treatment before jumping back on a plane and flying home.

“I was so lucky to have the support network here (in NZ),” Samantha says of her family, who cared for her children while she was in Australia.

For three years, she made the 6,500km round trip between New Zealand to Adelaide, until her husband was posted for work to Canberra.

There, Samantha was lucky enough to continue her treatment for a further three-and-a-half years before the family moved back to NZ.

Samantha is grateful for her husband and extended family support during her treatment in Adelaide.

“Within the first two years, I noticed the difference,” Samantha says of her health improvement.

“If I hadn’t had access to this treatment, I would have declined, I would be on breathing assistance and some sort of mobility help.”

In fact, the treatment was so successful it reversed some of the muscle deterioration and prevented any further demise.

The treatment has since been approved in NZ and she is now receiving care there.

“I am working full time, I try and go to the gym before work, I go to walks on the beach, I have teenage kids now,” Samantha says, adding without her treatment she wouldn’t be able to be a functioning member of society.

“So everything that goes with that, I am continuing to be a good mum and a supportive wife.”

She can’t believe that years ago she was told there was nothing she could do to preserve her quality of life.

Now, she refuses to let anyone else accept the prognosis of “there is nothing we can do”.

The mum is using her journey to health to show that treatment options should be available, no matter where you live.


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