Paul Challis describes how his daughter, Ellie, had her life changed forever when she contracted bacterial meningitis at just 16 months old.
Ellie Challis is a quadruple amputee and World Champion paralympic swimmer, who won a silver medal in the 2020 Tokyo Paralympics and a gold medal in the 50m backstroke event at the 2024 Paris Paralympic Games.
Paul supports Ellie in all her endeavours, accompanying her around the world so she knows he is ‘always there, or thereabouts’ if and when she needs him.
He says:
A standard day
It was a standard day – I was having my day off work to look after the kids. Ellie wanted to climb up on me for lots of cuddles and then at 6pm, she became quite lethargic and was suddenly sick a few times. Then the temperature started, and we just couldn’t get it down.
Knowing when something wasn’t normal
By 10pm, I knew things weren’t normal. Ellie was unbelievably lethargic whereas she was normally a very active baby. She was vomiting and she wouldn’t take a bottle, which, again, was completely unlike her as she used to drink lots. And nothing was bringing the temperature down, she was almost burning to the touch. This made me run her to the hospital.
Sent away
We had a slow response at the hospital and were initially sent away after being told she had a water infection. We were only home a few hours and she was sick again. It was then when I took her top off to change her, I saw the rash on her back.
I didn’t really have much knowledge of meningitis at that stage, but the one thing most people do know about is the rash. When I saw cherry-like blobs on her back, that was when I thought it might be meningitis.
An out-of-body experience
I took her back to the hospital and showed them the rash and just ran through triage. Suddenly there were doctors coming from everywhere.
Within the first half hour of us arriving back at Oldchurch Hospital, we had it confirmed that Ellie had meningitis.
It was like an out-of-body experience - signing forms to say ‘yes’ to doctors coming to see her and them drilling into her shins. As they were working on her, they were taking calls from doctors at St Mary’s Hospital in London who were advising them. I couldn’t see much, but sometimes they would part and every time they moved I could see the rash was just covering her. She wasn’t responsive.
She was transferred from the hospital in Romford to St Mary’s in an ambulance. I followed behind in the car – yet I don’t have any memory of it. Not driving, or parking, or anything.
Ellie died for two minutes
They had to stop the ambulance twice on that journey to St Mary’s to resuscitate her.
We were told her condition was ‘very serious’, but it was only much, much later that they told me that she only had about a 5% chance of survival.
She died for about two minutes that evening. Isn’t it amazing that this little girl that died for two minutes (and that could have been it) - and now look what she’s done? It’s just amazing. She amazes me every day.
Days and days of blackness
The doctors got her back and then there were days and days of her being in an induced coma… Days and days of blackness appearing in her limbs. Her arms and legs were turning the colour of charcoal.
There was one doctor in particular, who Ellie still sees now (and the doctor still cries every time she sees her), and every time she used to come and see us, it usually wasn’t good news. There was no hiding anything – what they needed to do and what the circumstances could be.
It was one of those weird things where you’d wake up in the morning and for a few seconds you’d not know what’s what, and then you’d realise you’re in this room down the road from what’s happening, and it’s real.
Whatever life deals you, you deal with it
Ellie was in a coma for 21 days, yet, remarkably, she was only in hospital for a total of six weeks. One of those days was my birthday and I remember it was the first day she was allowed a cuddle. I’ve never had a better birthday than that.
While she was in hospital, it became clear for a long time that they would have to amputate. She was transferred to a new hospital in Chelmsford. She is still close to the doctors who operated on her – every medic that came out of the room was in tears. Every single one.
As she recovered, I watched how they bandaged her, so eventually they allowed me to do that so that we could bring her home. It was lovely to have her home.
I thought, ‘This is it. You’ve got a little body to look after for the rest of her life.’ Whatever life deals you, you deal with it.
Every day has been an upward curve – there’s always a way
From that day onwards, every day has been an upward curve.
Ellie had to learn to speak again, as she had lost her speech when she was ill.
The day she first climbed the stairs it took her an hour to do it. She just kept stopping, taking a breath and starting again. No matter how long it took, she was determined to do it.
As a person generally, you have ups and downs, but my attitude is ‘there’s always a way’. Something might go wrong, but you’ll always find a way.
Ellie’s really good at failing. She fails fast. We’ve always looked at things with the view of ‘how can we do that better?’
Finding strength in shared experiences
We went to lots of events, with organisations like LimbPower and Meningitis Research Foundation family days (you’ve all played an incredible part, so thank you). Those sorts of events are invaluable – the children light up when they see similar people. You can see it in their eyes, ‘That person is like me’.
Being in the room with other families is enormous. You can talk to them about what you’re going through – things like different types of prostheses, for example. For every part of the family, from children, to siblings, it’s an enormous help.
Every person takes things differently. Children are extremely resilient. They want to get on, and they want to play – they want to do everything. I want people to know that, whatever their limits, it will never be as bad as you think.
An important story to tell
The way Ellie is, is quite incredible. I have been very lucky to have someone like her. What meningitis took away, has also presented some amazing experiences that she wouldn’t have had.
To go from being so close to dying, to the life she has lived, is an incredibly positive story, and it’s important to tell it – when things have gone from being so bleak, to see such a positive life can come from it.
From the day it happened, one life stopped and another one started.
No one ever wants to go through meningitis
Even with all the positives we have had, no one ever wants to go through meningitis.
What we went through – the amputation day … that first night was by far the worst 24 hours I could have ever lived. We were within seconds of a horrendous ending, and you just don’t want anybody to have to suffer that. That’s why we must defeat meningitis.
Ellie Challis has also kindly shared her story. You can read it here.