Lily Sillis noticed her face was spasming just weeks ago and since then her life has been dramatically transformed
Whilst applying her makeup one morning, Lily Sillis observed something peculiar. Her face began to spasm every time she touched it.
The active and health-conscious 23-year-old from Blackburn in Lancashire was a gym enthusiast who had a passion for animals and outdoor activities. However, whilst on the phone to 111, her face suddenly started drooping to the right.
Despite normal blood test results following an urgent trip to A&E, upon returning home, her entire face sagged and she found herself unable to speak. This shocking event occurred just weeks ago, on February 10, and since then, her life has been dramatically transformed.
Despite multiple visits to A&E and her GP over the subsequent two days, Lily experienced her first seizure on February 12, followed by two more in the ensuing hours, reports Lancs Live.
Lily, who runs her own dog walking business, shared with 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 resuscitation, Lily was given oxygen and underwent further tests as her condition rapidly worsened, sometimes experiencing 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 said: “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.”
Following an EEG scan, it was confirmed that Lily was suffering from Non Epileptic Seizure Attack Disorder and she was moved to the neurology ward at Royal Preston Hospital. Here, she was diagnosed with Functional Neurological Disorder and Functional Movement Disorder.
She reflects that her life changed ‘overnight’.
She explained to 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 occurs when the brain struggles to transmit and receive signals correctly, resulting in seizures, paralysis, tremors, speech difficulties and uncontrolled movements. Upon receiving her diagnosis, Lily admitted she’d been entirely unaware of the condition’s existence, and is now adapting to life with it “day by day”.
Whilst Lily acknowledged that certain days prove more manageable than others, the unpredictable nature remains “terrifying”.
She continued: “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.”
Her mother Sara described how the diagnosis has devastated their entire household. Sara reflected: “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, now residing in Ripon, North Yorkshire, has set up a GoFundMe page to cover Lily’s treatment expenses whilst also highlighting the condition itself.
“It’s such a cruel horrible illness,” she added. “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.