Joey Sharp, from Penicuik in Midlothian, was just 11 days old when he was diagnosed with a glioblastoma after what appeared to be a minor infection in his fingernail led doctors to discover a brain tumour. During the COVID pandemic, Joey underwent emergency brain surgery, followed by two further operations and around nine rounds of chemotherapy. Today, despite living with cerebral palsy and the lasting effects of his treatment, Joey is a happy, determined five-year-old preparing to start school. Inspired by her son's extraordinary courage, his mum, Sam, is now taking on her first marathon to raise funds for Brain Tumour Research and help give more families hope.
Here is Joey's story, as told by his mum, Sam…
Joey is our little ray of sunshine. He's the kindest, funniest and most loving little boy you could ever meet. He fills every room with laughter, has the biggest smile and never lets anything hold him back. He loves swimming and approaches everything with endless determination, joy and a smile on his face. He doesn't know the battles he's already fought, and in many ways I'm grateful for that. We certainly wouldn't change him for the world.
Our family is everything to us. My husband, Steven, and I have three beautiful children – Carly (8), Joey (5) and our youngest, Robbie (1). We're a very close-knit family, and nothing could ever have prepared us for what happened after Joey was born.
Joey arrived in December 2020 and, at first, everything seemed fairly normal. We brought him home and spent that first week settling into life as a family of four. The midwife and health visitor visited us every day because Joey had newborn jaundice that wasn't improving, he wasn't feeding well and he had started losing weight, so we were following a feeding plan. He was also having tiny spasms while feeding, which may have been an early warning sign, although at the time the midwives couldn't quite work out what was causing them.
We were eventually taken into hospital for further assessment and, while we were there, doctors noticed what looked like a tiny infection in one of Joey's fingernails. It was so small, almost like a grain of sand under the nail, but because he was such a young baby, they admitted him to the Royal Hospital for Children in Edinburgh for intravenous antibiotics.
Looking back now, it's unbelievable to think that something as insignificant as a fingernail infection was part of the reason doctors discovered the tumour that was threatening our baby's life.
During our very first night there, he started having tiny twitches. The doctors arranged an ultrasound scan of his head and, from that moment, everything happened at lightning speed. Within hours, Joey had undergone a CT scan and an MRI before doctors were asking me to sign consent forms for emergency brain surgery. It all happened so quickly there wasn't even time to wait for Steven to get back to the hospital. We were told that without surgery that day, Joey was unlikely to survive.
I can still remember that conversation as though it happened yesterday. Because it was during the COVID pandemic, Steven had already been sent home under the hospital restrictions, so I was sitting there alone with our 11-day-old baby while doctors explained what they had found. Nobody was panicking, but suddenly there was this overwhelming urgency. As a nurse, I understood enough to know how serious the situation was, but nothing prepares you for hearing words like that about your own child.
Thankfully, the hospital staff recognised how impossible the situation was and made sure Steven was allowed back into the hospital before Joey was taken to theatre. Together, we carried him down, placed him onto the theatre bed and handed him over to the surgical team. You put your complete faith in those people because it's the only option you have, but watching your tiny newborn baby disappear through those theatre doors is something no parent should ever have to experience. The wait felt endless. After surgery, samples from Joey's tumour were sent away for specialist analysis, including to Great Ormond Street Hospital.
We were both completely devastated when doctors diagnosed Joey’s tumour as glioblastoma – an aggressive and incurable brain cancer.
Steven and I were both completely devastated. Although the surgery had removed the immediate danger, we suddenly found ourselves facing a diagnosis that carried so much uncertainty and fear.
Over the next few years, Joey underwent three brain surgeries and around nine rounds of chemotherapy. Two operations were needed to remove the tumour, while the third came later after scar tissue caused drug-resistant epilepsy, leaving Joey having more than 30 seizures every single day. Watching your baby go through treatment is something no family can ever prepare for. Joey couldn't tell us how he was feeling, and every decision carried enormous weight because he was so tiny.
The chemotherapy was especially difficult. Joey became swollen from the treatment and the amount of fluid he needed meant he was constantly soaking through nappies, causing his skin to break down badly. It became much worse than ordinary nappy rash, and eventually the tissue viability nurses became involved to help manage it. Seeing your baby so uncomfortable and not being able to explain why it was happening or make it better was heartbreaking. Through surgeries, feeding tubes, central lines and countless procedures, one thing I was incredibly grateful for was being able to continue breastfeeding him throughout his treatment. It became a source of comfort for both of us during some of our darkest days.
COVID-19 restrictions made an already impossible situation even harder.
Only one parent was allowed to stay with Joey in hospital, so Steven and I had to take turns at his bedside. There was no opportunity to share the emotional or physical burden because one of us always had to leave. At home, Carly was only three herself and couldn't understand why her baby brother had come home for just one week before disappearing back into hospital. Because of the restrictions, she wasn't allowed to visit him and missed so much of his first year. Looking back, that's one of the hardest parts of the whole experience.
Even when Joey was home, life wasn't straightforward. His Hickman line meant he couldn't enjoy simple childhood moments like sharing a bath with his big sister, and infections meant more procedures to replace it. We spent so much of those early months in and out of hospital that normal family life simply didn't exist. We just learned to take one day at a time.
There was very little research into Joey's type of brain tumour, so every step of his treatment felt uncertain. We were incredibly proud that he was able to take part in clinical trials in Scotland, where additional blood tests helped researchers better understand chemotherapy treatment in babies. At the time, we didn't know what impact those studies would have, but we hoped they might help improve care for children diagnosed in the future.
The first real moment we allowed ourselves to hope came towards the end of Joey's treatment. He was in the children's day ward receiving his final chemotherapy when our consultant walked over to us. I remember she had tears in her eyes. Because it was an open ward with lots of other families around us, she couldn't celebrate loudly, but she quietly told us that Joey's latest scan showed no evidence of disease.
For the first time in months, we felt like we could finally breathe again.
We had been preparing ourselves to hear that Joey would probably need more surgery after chemotherapy, so hearing those words was overwhelming. It was the first time in months that we felt we could look beyond the next appointment or the next scan and simply enjoy having our little boy with us.
Today, Joey continues to amaze us every single day. He attends nursery, has lots of friends and has started school this month, which is a milestone we once weren't sure we'd ever see. Watching him walk through those school gates was incredibly emotional, not just for our family but for the many doctors, nurses and therapists who have supported him since he was only 11 days old.
Although the treatment saved Joey's life, it has also left him with lifelong challenges. He lives with cerebral palsy and has weakness down his right-hand side, with very limited function in his right hand. He wears a leg brace, tires easily and uses a wheelchair for longer distances, but he never lets those challenges define him. He approaches life with so much determination and happiness that it's impossible not to be inspired by him. The bond he now shares with Carly is incredible and seeing them together makes up for so much of what they lost during those early months.
Joey's diagnosis changed me forever, but it also left me carrying anxieties that have never really gone away.
Having a child with a disability means constantly advocating for them, adapting your life and fighting battles you never imagined you would face. Despite everything, we will always be grateful to the consultants, nurses, play specialists, physiotherapists, speech and language therapists and occupational therapists who cared for Joey and supported our family through the darkest days of our lives. We simply wouldn't be where we are today without them.
This year, as I approach my 40th birthday, I've signed up to run in the Edinburgh Marathon 2027 in aid of Brain Tumour Research. I am definitely not a runner, so this will be one of the biggest physical challenges I've ever taken on. Whenever training gets difficult and I want to stop, I think about Joey and everything he has already overcome. His courage motivates me to keep putting one foot in front of the other.
Brain tumours remain the biggest cancer killer of children and young adults, yet research still receives only a tiny proportion of national cancer research funding. More research means better treatments and, ultimately, more families getting the chance to watch their children grow up. I'm incredibly grateful to Brain Tumour Research for establishing the first Scottish Brain Tumour Research Centre of Excellence, which is dedicated to advancing glioblastoma research. I hope the work taking place there will help improve outcomes for anyone facing this devastating diagnosis in the future.
Running in the Edinburgh Marathon is my way of giving something back to the people who gave our son a future.
If sharing Joey's story gives another family hope during the darkest time of their lives, then telling it is worthwhile. We know not every family gets the outcome we've been blessed with, and we never take a single day with Joey for granted. Every milestone he reaches is a reminder of just how far he has come, and why continuing to support Brain Tumour Research is so important.
Sam Sharp
September 2026
One in three people in the UK knows someone affected by a brain tumour. This disease is indiscriminate; it can affect anyone at any age. What’s more, brain tumours continue to kill more children and adults under the age of 40 than any other cancer yet, to date, just 1% of the national spend on cancer research has been allocated to this devastating disease since records began in 2002.
Brain Tumour Research is determined to change this.
If you have been touched by Joey's story, you may like to make a donation via www.braintumourresearch.org/donate or leave a gift in your will via www.braintumourresearch.org/legacy
Together we will find a cure.
