Aiysha Hancock chats and plays with her young daughter just like any other mum.
But when toddler Aurora flashes her a grin, she cannot smile back.
The 20-year-old’s face is partially paralysed as the result of a rare condition brought on by a simple cold.
The condition also temporarily robbed her of the ability to breathe and move, leaving her in intensive care.
Aiysha’s determination and the skill of hospital staff saw her overcome those threats to her life.
Yet despite this huge progress, her smile remains absent.
It’s all the more distressing for Aiysha as it’s the second time in her life she has lost her smile to paralysis brought on by Guillain-Barre syndrome (GBS).
GBS is thought to occur when something goes wrong with the body’s immune system after it has fought off a common infection such as a cold or stomach bug. The immune system attacks the nerves, leading to paralysis.
It took Aiysha more than a decade to smile again after it struck the first time when she was three.
Now she has spoken publicly about her second fight with GBS in a bid to raise awareness of the condition, which affects just 50 people in Wales every year.
Aiysha, who lives in Porthcawl, said: “Both times I had just a normal plain, basic cold and the cold went away and obviously, when it goes away you expect nothing else.
“But this time the cold went away and three days after the cold disappeared I had pins and needles throughout my legs.
“I tried elevating my legs, I tried walking it off, I tried everything I could think of. Throughout the day the pins and needles were getting worse and worse and worse.”
In April 2018 she went to bed hoping a good rest would solve the problem. Then she woke in the early hours unable to move her legs.
Her parents feared GBS had struck again and drove her to the Princess of Wales Hospital in Bridgend.
Aiysha said: “The person who was checking me over…I remember him telling me that it’s rare to get this illness, it’s even rarer to get it twice. I’ve heard this the whole of my life.”
Tests were ordered and Aiysha was taken to the X-ray department. She doesn’t remember much after that.
The paralysis spread up her body until she was unable to breathe for herself.
“My dad said it was about six hours later that I was completely, full-on paralysed
“They put me to sleep. I’m not sure how long it was. I think it was a month.”
Aiysha was placed on a ventilator in the intensive care unit and was fed through a tube.
Princess of Wales Hospital Lead Intensive Care Consultant Dr Richard Self said about a quarter of the people who get GBS end up in intensive care.
He said: “We’ve known about the disease for at least 100 years but we don’t really understand what causes it. Most people beforehand will have experienced a viral infection or maybe some gastroenteritis, some diarrhoea, and then it’s thought this may trigger an immune disorder when the body attacks the nerves.
“The treatment of it firstly is giving people immunoglobulin injections. These are gained from other people’s blood.
“Giving somebody other people’s antibodies somehow seems to reduce the severity and duration of the illness. Above that, time is the great healer.
“Most people will get better, unfortunately about a quarter of people who suffer from this don’t get completely better and may have long-term weakness and the whole experience of being this ill leaves long-term psychological consequences as well.”
When Aiysha first woke up in the intensive care unit she was unable to speak as she had a breathing tube inserted in her throat.
But through working with highly specialist speech and language therapist Sali Curtis she learned to communicate again by choosing pictures of things she needed or wanted using her eye gaze.
She moved on to finger spelling using an alphabet chart before regaining control over her swallowing and then her voice.
Then, by setting herself small and achievable goals such as sitting up in bed and walking to the toilet, she became well enough to go home to daughter Aurora, then just nine months old, and boyfriend Luke in June.
Her progress amazed hospital staff.
But Aiysha remains very weak and continues to suffer from occasional pins and needles and pains in her feet, legs and hands.
She has also yet to regain her smile.
“I lost my smile then and I think it wasn’t that long ago – I was about 16 to 18 – I kind of got my smile back.
“Then obviously I got Guillain-Barre again and lost it again.”
She has taken comfort from communicating with fellow GBS sufferers via a Facebook group.
This has inspired her to set two long-term goals: to establish a support group for people who have suffered from GBS, and to recover well enough to run a marathon one day.
She also hopes that by speaking out, people will gain an understanding of the condition and the affect it has.
Aiysha said: “It affects me loads of different ways. My whole body is a lot weaker. I struggle to lift up the basic things most days. Even now, I have done loads but I get so tired so easily, the basic things are hard to lift up sometimes.
“Normally, I’d be able to walk a good distance. Don’t get me wrong, I wasn’t the athletic type. But I could have walked it if I wanted to. But now I can walk to the end of the street and some days I’ll be absolutely knackered.
“I think the cold makes it worse. My hands and feet go numb randomly because of how cold they are.”
Regarding her plans for a support group, she added: “I do hope, somewhere in the future, to set up my own one where people come together who have this illness or have had this illness just to tell each other their stories or just to talk about what’s happening with their bodies or just to have someone to talk to.
“I think that would be amazing because there’s a lot of thoughts that go round in your head after it and while having it and you don’t understand them. And if you knew someone with it or someone who has had the same experience as you, I think those thoughts would be a lot less and you would actually get those feelings out and it would be so much better for everyone.”
