By Sophie Norris
A sporty teenager went from training for his judo black belt to forgetting how to WALK – but took his first steps in two years were caught on camera last week.
Conor Lewis, from Forest Town, Notts, had been fit and healthy schoolboy until he was rushed to hospital with severe ‘twitching’ in his head and shoulders in September 2015.
After being diagnosed with functional neurological disorder (FND), the youngster went from training for his black belt to being unable to walk and was left a ‘prisoner in his own home’.
However through determination and physio, sports student Conor took his first steps in two years – leaving his proud physiotherapy team in tears.
Inspiring footage recorded by his proud physiotherapy team shows the youth, now 18, struggling to even move his legs at first but after 15 minutes he is bravely taking his first tentative steps.
Mum Rachel said: “When I saw this video, it was like magic. I was sat at home having a coffee then these videos starting being sent [from college].
“It was crazy how it just happened. His physio decided to take off the leg braces and noticed Conor was weight-bearing so they just tried it out and it was such a surprise.
“He has never given up or had a ‘why me’ attitude and I feel he will one day be able to at least walk normally some of the time and maybe just be a part-time ‘wheely’.
“Considering we thought he would never walk again, anything is an blessing.
“One of his physiotherapists recorded him taking the steps for me and he had the whole room in tears.
“He had gone from being barely able to move his legs to taking multiple steps in the space of 15 minutes.”
Conor, who is currently studying a disability sports course at his new college, says that due to the complex nature of FND, there was nothing doctors could do to heal him straight away.
However he thanks his new college and his new girlfriend for helping him turn things around – not to mention hours and hours of physio.
Conor said: “I took those steps last Friday. It was amazing to do that but I felt really tired out that weekend.
“We are working now to try and make sure I’m not tiring myself out too much.
“Having FND definitely changed my life but actually, I’ve become much more positive.
“At first I’ll admit things didn’t look good but now it’s like I’ve moved forward and get moving now.
“It’s always a worry that I’ll get worse again and lose my ability to use my legs fully in the future but it’s just a case of keeping at it.
“When I took those steps I didn’t want to stop.
“Rebecca [his girlfriend] doesn’t mind that I have FND and she is at the same college as me at the moment.”
The teenager’s life change dramatically on September 28, 2015, while training for his judo black belt, when he developed ‘severe twitching’ in his head and shoulders.
Going from perfectly well to using a wheelchair full-time in the space of six weeks and Rachel claims their ‘life stopped’.
Rachel said: “At 16, Conor was rushed into hospital with severe twitching in his head and shoulders while training for his judo black belt. He was perfectly well and healthy before. He had just been feeling a bit off the day before.
“He was admitted and over the next few days started having violent seizures which lasted up to six-seven hours. He was kept in for six days then released after being referred to a specialist.
“When numerous tests came back negative, he was discharged with a diagnosis of functional neurological disorder (FND) and we were told there was little they could do.
“Over the next few weeks, Conor deteriorated having violent seizures almost daily and severe pain in his legs. He was able to use a walking frame for a few weeks but was in a wheelchair after six weeks for his own safety.
“They don’t really know the cause behind it and therefore there isn’t just one treatment.”
Struggling with two teenagers and a full-time job as well as caring for Conor, Rachel was forced to give up her job and care full-time.
Rachel said: “It affected my life massively. I went from having three very independent teenagers, a really good career path and being financially comfortable after years of working shitty jobs to support my children.
“At first, I thought I would just be having time off while Conor recovered but quickly realised he was actually getting worse to the point after six weeks out of hospital he was losing his legs completely and having almost daily very violent seizures.
“I had to give up my job to care for him full time, having to go onto benefits which was a big blow financially and mentally. Conor got to the point where he had to move downstairs for his own safety which meant no access to shower or toilet, he had a commode and bed bath.
“I gave up my job as a shift manager at a bakery to care for him full-time which had a big financial and personal impact.
“Our occupational therapist helped us apply for an adapted properly but it was six months before one became available and in that time, to be honest, we were virtual prisoners living in one room as I couldn’t get him out of the house without help.
“This made all the difference as he was able to use the toilet, shower and access the whole house and garden
“We moved house eventually which created debt but at least we had some kind of life again. I got Conor into Portland Training College which was a turning point for him mentally.”
Although Conor is recovering slowly now, Rachel claims the effect of his seizures even caused her physical injury, to the point she dislocated her shoulder.
Rachel said: “Seizures have caused many injuries to both Conor and myself including cracked ribs for him which took away what remained of his independence for days at a time and a dislocat
“He had previously been receiving 40 minutes once a week and unfortunately it was just basic physiotherapy and not helpful. Although Conor still remained the same, the extra physio he received at Portland made a lot of difference.
“His attendance was only around 50% originally because of his health but in his first year at the new college things started slowly improving, his seizures gradually over the year becoming only once or twice a week and him going from his legs being totally dead to being able to voluntarily activate his muscles on occasion.
“He did a lot of supported standing work over the summer holiday with equipment the college lent us.
“In his second year the progress has sped up to the point where he made his first steps. He still has a lot of work to do, he can only walk short distances extremely slowly and he needs a lot of support, but he is practicing every day.”