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Laura Rawlinson, was at home in Crawley, West Sussex, with her daughter Ella when she first she started feeling unwell. That was in May 2019.
Unfazed, she thought it would pass – but 10 days later, she woke with double vision.
From there, things deteriorated rapidly, and Rawlinson raced to East Surrey Hospital where she soon became unable to speak or walk.
Her husband James rushed home from a business trip in Italy to be by her side, as doctors diagnosed her with Miller-Fisher Syndrome (MFS). A form of Guillain-Barre Syndrome, where the immune system mistakenly attacks the nervous system.
Nine months on and, having spent $23,000 Rawlinson's care and adaptations to the family home, the couple have launched a GoFundMe page to help pay for her ongoing rehabilitation.
“You never dream this type of thing will ever happen to you," said Rawlinson, who had only ever been in hospital twice before her nightmare began. Once to give birth to Ella, and a second time to have her appendix removed because of an appendicitis.
“Just the week before it happened, we had a big party with our family and friends at our house. We were just living our normal lives," she said.
When Rawlinson was first struck down by a chest infection last spring, she initially put it down to the exhaustion of looking after little Ella.
When she woke with double vision, she phoned the NHS non-emergency number and took herself to casualty for a check-up. But medics could not find anything wrong with her eyes.
Just 24 hours later things took a turn for the worse when her hands went numb, and her legs began to tingle.
Panicked, Rawlinson called her mother-in-law Karen, who offered to take Ella whilst she sought medical help. By the time she got back to East Surrey Hospital that evening, she could no longer stand.
“I was a bit wobbly when I first got in the car. I didn't think to call an ambulance because I didn't think I was that bad at the time," she said.
“But I deteriorated on the drive over, and by the time I got to the hospital I needed a wheelchair."
“It was really scary how quickly it happened. I didn't know what was happening to me. At that point, I wasn't in pain, but I was losing all sensation in my body and it was getting worse very quickly."
Meanwhile, Rowlinson's relatives phoned James to tell him that he needed to come home immediately from his trip, which should have lasted another two days.
By the time he arrived at her hospital bedside later that night, she had even lost the ability to swallow.
“I couldn't sit up on my own, or press the call button for help," she recalled. “James said my speech was slurred and words weren't coming out in the right order."
During Rowlinson's first night in hospital, it looked as if she may not make it when she deteriorated to the brink of respiratory failure.
Luckily, she pulled through, and to give her body a chance to fight, medics decided to sedate her as they ran diagnostic tests.
For three weeks she remained sedated and on a ventilator in intensive care, during which time a medic recognized her symptoms as MFS.
“They did a CT scan, an MRI, a lumber puncture, an ECG – they did almost every test they could to try and work out what was wrong with me," she said.
Once she had her official diagnosis of MFS, she began her treatment. Intravenous immunoglobulin therapy, where she was given plasma from donor blood to help strengthen her immune system.
Remarkably, after just five days of treatment, she rallied. But, although her immune system had stabilized, she was left paralyzed unable to walk or talk and could only communicate using her feet.
“I was completely paralyzed, including my eyeballs and my eyelids," she said. “They were fixed open and dilated, and they could not react to light."
“I had to wear sunglasses and have my eyes taped shut at night so I could sleep. I felt really vulnerable. I was having horrendous nightmares. I knew what was going on around me, but I couldn't speak."
“The only way I could communicate was through a foot button. It would notify the nurses that I needed help, but they would then have to work out exactly what I wanted. I'd tap my foot once for 'Yes' and twice for 'No.'"
Rowlinson spent a total of 120 days in intensive care before she began to see signs of progress.
“In the first month, I couldn't move anything besides my foot," she continued.
“Towards the end of June, I could just about move my head. I was also able to move my eyes from left to right. Very gradually, towards the end of my stay, I started getting some feeling back in my legs, but they were still very weak."
In June, she had a tracheostomy – where doctors create an opening in the windpipe to enable patients to breathe more easily.
And, after slowly weaning off the ventilator that was aiding her breathing, in mid-July, she was fitted with a Passy-Muir valve to encourage airflow across her vocal cords, and also began respiratory therapy.
In the last week of August, she had her tracheostomy replaced with a new, smaller version, and could finally talk without using her valve.
“The first time I could speak properly I told James I loved him," she said.
From there, she slowly rebuilt her speech one word at a time. The doctors set me tongue twisters with letters I struggled with, like W and S.
“Mentally, I still had a full vocabulary – it was just getting my vocal cords, my tongue and my lips to work together," she added.
While she was in hospital, Rowlinson only got to see her daughter once a week.
“Ella was allowed to visit me, but we didn't want her to come into intensive care because of the risk to her health," she said.
“So, once a week I was taken down to the garden in my wheelchair so I could see her. It found it very difficult to be apart from her for so long. The first time Ella came to see me she was unsure of what was going on, but she soon settled."
“It was awful being away from her – it was the hardest part of it all."
On one special occasion – Ella's first birthday on September 5 – Rowlinson was allowed home for an hour to spend time with friends and family and celebrate with cake.
Later that month, she was transferred to Royal Hospital for Neuro-disability in Putney, London, to continue with her rehabilitation.
There, she had a combination of different therapies, including physiotherapy, speech and language, art, music and occupational.
At Christmas time, she was still in a hoist – a sling that can be lifted by a mechanical system – but now, she can push her own wheelchair, and walk with a Zimmer frame.
“We felt like it was really important for me to be at home, so we made the changes to the house, like putting in a stairlift and adapting the bathroom," she said.
“James even bought a mobile hairdresser bowl on wheels so he could wash my hair while I was in bed – a hospital bed set up in our lounge. I was still wearing a nappy when I came home but I progressed to the commode just before Christmas."
“I am still unable to feed or wash myself, though, which is horrendous. I would like to say you get used to it over time, but I don't think you do."
Now, her body must regenerate the nerves that were damaged by MFS, which doctors believe happened because her body mistakenly attacked itself, rather than fighting her chest infection.
She has regained feeling in most of her body – but the sensation in her hands and feet remains dull.
“I don't know where my arms and legs are in space unless I'm looking at them," she said. “They are some of the finest nerves and they tend to repair themselves last."
To help with the costs of Rowlinson's ongoing care – and the loss of income from being unable to work – she and James have set up a GoFundMe page, as a last resort because the type of critical illness insurance cover they had at the time did not cover MFS.
The GoFundMe page to date, raised more than $13,000. Having left Royal Hospital for neuro-disability at the start of March, Laura, who has also been left with muscle weakness, is now isolating at home in the wake of the coronavirus outbreak.
Though nobody can say for sure if and when she will fully recover, she is determined to remain positive.
“The future is now a little bit uncertain, but there is no reason why I should not be able to get to exactly where I was before," she said.
“We are very lucky to have an amazing circle of family and friends. And people have been so generous," she added.
“Having quality time with Ella is the main thing that keeps me focused on getting better. Her growing up without really knowing me has been worse than the physical pain. But now I am home, she will sit with me and have stories, and we do puzzles together. She loves to make me tea and cake in her kitchen, too."
“I can't do any of the practical stuff, like bath, feed or change her – but now, my arms are just about strong enough to cuddle her," she concluded.
“I have always pushed myself hard to get better for her and I am determined not to let this beat me."
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