“I’ve been in and out of hospitals for as long as I can remember”

Written by Nikita Sharma

Alice Doyle, 22, shares with Nikita Sharma her memories of health struggles hard to imagine, decisions made at just 10 years of age and developed optimism, even in the darkest times.

It’s raining outside and inside the café, the cold is uncomfortable and unmoving. Everything is still, aside from the coffee machines and a distant wail from a baby, it is silent. There is no one.

Alice Doyle is sitting at a table fresh-faced with a welcoming smile, contrasting the ambience of the gloomy café.

No one could tell that she has spent the year recovering from a terrifying brain surgery. 

“I had six seizures in one night,” she says.

Alice recalls the scary night she experienced seizures for the first time that led to her hospitalisation for three weeks. She and her family were spending a few days at their flat in London during mid-October when one-night Alice went into her first seizure.

 By the time her younger sister had ran and alerted her parents, Alice had come out of that seizure and went straight into another one. 

An ambulance was called and when she was changing out of her nightie, she went into another one. She had her fourth seizure while the paramedics were getting her down the stairs, her fifth in the ambulance and her sixth seizure in the hospital. 

The whole thing lasted 10 minutes. This was serious.  

Multiple scans and blood tests were taken but all came back clear. Something was clearly wrong. An incorrect diagnosis meant she was at an unsuitable hospital and had to wait three days for a bed at the National Hospital of Neurology. 

“Those three days waiting for a bed were an absolute nightmare,” she vividly remembers. 

Three weeks later, and after shaving a good chunk of her blonde locks off from the back of her head, a valve was replaced in her shunt. 

Alice has had this shunt in her head since birth. She was born with hydrocephalus which is a condition causing a build-up of fluid on the brain.   

Alice’s mother has a rare blood abnormality disorder called immune thrombocytopenia and was told at 22 weeks pregnant that Alice had hydrocephalus and that she could be blind, deaf and brain-damaged. 

“Mum was told that it was likely they wouldn’t be able to take me home – but I survived.”

Alice was nine months old when her parents realised something wasn’t quite right with her development. She was diagnosed with cerebral palsy.

“Cerebral palsy is something that stays with you for life, it was heart-wrenching for my parents when they were told I might not be able to walk,” she says.

Alice started physiotherapy and Botox injections when she was a young child. The pain was worth the results. 

“I could feel the injections making my legs stronger. I could actually walk.”

Alice’s life after the diagnosis consisted of surgeries, physiotherapy sessions and determination. 

“I’ve had 17 surgeries. 10 on my legs and seven on my brain – wait, sorry! I’ve had 18; 10 on my legs and eight surgeries on my brain – that’s why I can’t remember them all!” she grinned. 

Alice recalls the biggest operation she had, in 2007. She was just ten years old and had decided she would have selective dorsal rhizotomy. The surgery would help her walk with much more ease. 

She knew of all the struggles and the hardships that came with post-surgery – how uncomfortable the healing process would be and how long it would take. But Alice is tough. You can tell by the way she talks. By the way she carries herself. She is strength. And at 10 years old she was exactly the same. 

“All I knew was I wanted to be stronger. It was a horrible big operation, but it had to be done.”

She was on her back for two weeks after the operation and stayed at the hospital for 3 months. She had hydrotherapy and physiotherapy every day and used a tilt table and parallel bars. 

Alice is wearing a sweatshirt with the word ‘LOVE’ sewn on it. She embodies the word written on her shirt. It is also the love of her friends and family that supports her. Alice’s parents and sister are first on the scene when anything happens.

“I am who I am because of the way I’ve been brought up,” she says.

“My mum is a positive person, my dad is a positive person, my sister is a positive person. I’ve been taught to keep moving in life. Yes, we have our up and down days but then we move on.”

Having hydrocephalus and cerebral palsy have had their challenges but Alice has developed an unbelievably strong and positive mindset exactly because of having to grow up with these conditions. Alice wants people to know that if she wants something, she makes it happen. 

“I don’t let anything get in my way – I get things done,” she says.