Lily Sillis’ condition deteriorated rapidly, sometimes having up to 20 seizures a day
Lily can experience up to 20 seizures a day
As she did her makeup one morning, Lily Sillis noticed something strange. 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.
Whilst on the phone 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.
That was just weeks ago, on February 10. 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 February 12, before having two more in the hours that followed. Lily, 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 while still being able to hear and feel everything around me.”
After being rushed to resus, Lily was put oxygen and had more tests ran while 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 described as a healthy and independent woman before the ordeal
Lily added: “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.”
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 told 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.”
Lily being fed in hospital
Functional Neurological Disorder is a condition where the brain has difficulty sending and receiving signals properly, which can cause seizures, paralysis, tremors, speech problems and involuntary movements. When Lily was diagnosed with it, she said she had never even heard of the condition, and now she is learning to live with it “day by day”.
Although Lily said 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 lives in Ripon, North Yorkshire, has launched a GoFundMe page to help pay for 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.
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