Lily noticed her face drooping one morning – within weeks she went from gym-goer to needing round-the-clock care
Carrington Walker and Emma Butterworth
16:50, 14 Mar 2026
Lily enjoyed a healthy lifestyle
As she applied her makeup one morning, Lily Sillis spotted something unusual. Her face was spasming every time she touched it.
The fit and healthy 23-year-old, from Blackburn, loved going to the gym. She also adored animals and outdoor adventures, reports Lancs Live.
Whilst on the phone to 111 her face suddenly started dropping to the right. After being rushed to A&E, Lily’s blood tests came back normal, but upon her return home her whole face dropped and she suddenly couldn’t speak.
Lily in hospital
That was just weeks ago, on 10 February. Now her life has changed completely. Despite numerous trips to A&E and her GP over the next two days, Lily experienced her first ever seizure on 12 February, before having two more in the hours that followed.
ily, who owns her own dog walking business, told LancsLive: “I could hear everything around me and feel everything happening but my eyes were closed and I couldn’t respond or move.”
“I was told to go back to A&E but when I arrived I collapsed on the floor having full body convulsions whilst still being able to hear and feel everything around me.”
After being rushed to resus, Lily was put on oxygen and had more tests run whilst her condition continued to deteriorate rapidly, sometimes having up to 20 seizures a day. Some of these seizures lasted up to an hour, and after each one Lily was left with “full body paralysis” for hours, unable to move or speak.
Lily was put on oxygen when rushed to hospital
Lily shared: “One day I tried to stand up and my legs simply wouldn’t move. I tried with everything in me to put one foot in front of the other but my body just wouldn’t respond.
“I tried to stay positive because at that point I still had use of my arms so I could transfer myself onto a commode or into a wheelchair, even though I wasn’t allowed off the ward due to the seizures and couldn’t sit up for long. But a few days later even that was taken away.
“I tried to get up using my arms like I had been doing and they wouldn’t work either. They were paralysed. Suddenly I couldn’t feed myself, couldn’t shower myself, couldn’t even go to the toilet independently.
“At 23-years-old, after being such an independent person, this completely broke me. I was lying in a hospital bed being showered by nurses, fed by my own mum and using a bed pan because I couldn’t move my body.
“Even when my legs sometimes decided to work again they tremored so violently that I couldn’t walk safely without falling or support.”
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After undergoing an EEG scan, it was confirmed that Lily had a Non Epileptic Seizure Attack Disorder and she was transferred to a neurology ward at Royal Preston Hospital. Here, she was informed she also had Functional Neurological Disorder and Functional Movement Disorder.
Her life, she says, had changed ‘overnight’. She told LancsLive: “When I arrived there my condition deteriorated even further. I started having full body involuntary movements where I was hitting and kicking uncontrollably as if someone had completely taken over my body and these episodes could last for hours.
“One episode lasted seven and a half hours of non stop convulsions including facial spasms, my head and neck moving violently and my arms and legs thrashing. Between seizures and episodes I was completely exhausted, paralysed and struggling to speak.”
Functional Neurological Disorder is a condition where the brain experiences difficulty transmitting and receiving signals correctly, which can result in seizures, paralysis, tremors, speech difficulties and involuntary movements. When Lily received her diagnosis, she stated she had never even heard of the condition, and now she is learning to manage it “day by day”.
Whilst Lily acknowledged that some days are better than others, she finds the unpredictability to be “terrifying”. She added: “Just weeks ago I was a 23-year-old gym goer who loved animals, the outdoors and adventure and now I need a full time carer and have lost most of my independence including the ability to drive and some days even walk.”
According to her mother Sara, the diagnosis has turned their family upside down. Sara said: “You’ve got this child that’s gone from being so independent to your parents having to feed you and wash you. It’s so devastating because you cant do anything to fix it.”
Sara, who now resides in Ripon, North Yorkshire, has set up a GoFundMe page to help cover the costs of Lily’s treatment, as well as raising awareness about the condition.
“It’s such a cruel horrible illness,” she continued. “For now we are doing everything we can to raise money for lily for extra treatment.
“It’s not even about donating its just about getting her story out there to help other people know about this, if we can do anything we can to spread awareness that’s what we want for her.”
Lily’s donation page can be found here.