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Home / Rotorua Daily Post

No small feat for Rotorua woman with Guillain-Barre syndrome who plans to walk after months in wheelchair

Leah Tebbutt
By Leah Tebbutt
Multimedia Journalist·Rotorua Daily Post·
12 Jan, 2019 01:34 AM6 mins to read

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Pushed back by rare Guillian Barre syndrome, Stallone hopes to walk again.

A Rotorua woman plans to defy all odds and walk 2km next Saturday, despite being confined to her wheelchair for the past two months.

On November 23, Stallone Edmonds Tepania was diagnosed with the rare Guillain-Barre syndrome, a disease with no known cause or cure.

The Rotorua Daily Post talked to Rotorua man Jackson Lee last month about his journey with the same illness.

The autoimmune disorder, which causes the body's immune system to attack its own tissue, has left Stallone in a wheelchair with muscle weakness up to her waist.

But on January 19, Stallone plans to take part in the Guillain-Barre syndrome awareness event, Walk 2k with Stallone, during which she will push Jackson for the last 100m, across the finish line.

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Her story began in 2017 when her dad had a mini-stroke, her mother had a double bypass after a large heart attack, her mother-in-law was diagnosed with cancer and her now 2-year-old daughter, Haylah-Nix, was in ICU due to severe asthma.

"So 2017 went down pretty fast for us and we couldn't wait to see the back of it. We just thought 'bring on 2018'," Stallone said.

Then in April 2018, Stallone and her husband, Mikahere Tepania, lost their home in the April floods. The family moved into Edmonds Boxfit Gym which Stallone has owned for five years.

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A week later Stallone's mother-in-law lost her battle with cancer.

"It just got too much so my husband and I parted as well.

"We were dealing with trials on top of grief and when you throw grief in the mix it changes everything."

But just when she thought it was all over, in early June her nana passed away from heart failure.

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Stallone said she continued being a solo mum and running the gym by herself while trying to keep everything "above water".

Crowned as Mrs Rotorua for 2018 picture with her parents. Photo / Supplied
Crowned as Mrs Rotorua for 2018 picture with her parents. Photo / Supplied

On November 16 she woke up with a sore throat which she ignored, determined to play in a netball tournament the following day.

"At the tournament I felt off, I knew I was sick. I was coughing up blood on the court."

It wasn't until after her fourth game, when she noticed her daughter was ill, that she gave up on the netball and took Haylah-Nix to the hospital.

Once there, a nurse noticed Stallone was unwell and checked her bloods finding an infection. They gave her antibiotics and the next day she went home.

She and Mikahere were trying to get back together so, three days after she woke up with the sore throat, she asked him if he would be able to run the gym.

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Stallone being assisted by her husband, Mikahere Noop Tepania. Photo / Supplied
Stallone being assisted by her husband, Mikahere Noop Tepania. Photo / Supplied

"That in itself shows I'm sick because I never pull out of anything."

While Mikahere was taking a training class, their daughter needed to go to the toilet.

"I went to get up to take her but I couldn't. My whole body, from my feet and it just started moving up, just started shutting down," Stallone said.

It was that point, when she physically could not walk, that she swallowed her pride and went to hospital.

That Friday she was diagnosed with Guillain-Barre syndrome.

"The day I was diagnosed I said 'I need to be sent to rehab. I need to walk again.'

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"It spread up to my waist so when I needed to go toilet, I knew I needed to go, I had the sensation but I didn't have the muscle to actually go."

Determined to go home before Christmas, Stallone spent just four weeks in hospital.

Stallone was in hospital for weeks but is determined to walk again. Photo / Supplied
Stallone was in hospital for weeks but is determined to walk again. Photo / Supplied

She believes healing comes in many forms and considers herself lucky that she had so much support while in hospital.

"There were visitors after visitors to the point where the nurses asked 'are you famous?'.

"There was just so much love from so many people that I believe my healing came fast through it. There is the medicine, the physio, the rehab but then there's the prayers, the visits, the messages, the support."

Since leaving hospital, Stallone has been taking little steps, doing laps across the gym.

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Being a trainer who preached mindset every day, Stallone knew it was her time to take her own advice.

"When I got told it would be six to 12 months before I would make a full recovery I was like 'okay I need to beat the odds'. I need to be who I am with all odds against me.

"I can still move what I can move but my ultimate goal is to just stand by myself and have the strength to lift my girl up."

Stallone admits some days she doesn't feel like a mum because she can't do something as simple as making her daughter breakfast.

But her first trip to the supermarket, described as the best trip ever, made her feel like a wife again because she could provide for her family.

Stallone has to walk with assistance from walking frames. Photo / File
Stallone has to walk with assistance from walking frames. Photo / File

"There are certain times when reality hits. Every day is a good day and I am grateful but it is not until something happens or someone says something or my daughter needs something and I can't give it, when reality hits."

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Reflecting on the past two years, doctors suggested that stress and a broken heart from losing her home and family members could have caused the disease.

"And I guess they're right because I was still trying to play netball.

"One thing I have learned is to listen to my body. Maybe when I was coughing up blood on the netball court, if I went that day and just stayed in and listened maybe it wouldn't have reached my waist."

Stallone said it was a tough transition going from being so active to being confined to walking aids.

But she knows it has also been a blessing because she is now grateful for what she has.

"Although I feel like I have been stripped of a lot, I also feel like I have a lot.

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"I thought I was going to lose my parents and I could not imagine this journey without them."

Stallone, who is working towards being able to walk 2km next Saturday, wants to complete the event for all those who have supported her so far.

"I live in a gym. I wake up every day to a reminder of what I was. I wake up every day and go across that gym to the bathroom to flashbacks of me in the ring fighting.

"So when I get back to that point there is never going to be a day with an excuse. I'll never have an excuse again not to train, because when you actually have an excuse you wish you didn't."

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