Just4Children are fundraising to provide Joey-Lee with therapy and specialist equipment for his safety and comfort.
Joey-Lee is aged 3 from Gosport in Hants. Born at just 23 weeks and weighing 700 grams, Joey-Lee has battled impossible odds. Now living with cerebral palsy, blindness, epilepsy, and multiple medical needs, he needs your help to give him the life he deserves.
Our beautiful little boy Joey-Lee was born at 23 weeks and 4 days, weighing just 700 grams. He came into this world far too soon, feet first, and needed to be pulled out — a moment that changed our lives forever. Doctors gave him just a 5% chance of survival, but from that very first breath, Joey showed the world what it means to be a fighter.
We were told over and over that he wouldn’t make it. We were told to prepare for the worst, to let him go. But I couldn’t — I wouldn’t. My baby had a heartbeat, and as long as he had that, I would keep fighting for him.
At only a few weeks old and weighing just 640 grams, Joey had to undergo his first major surgery at Southampton General Hospital after developing a perforated bowel. His tiny body was covered in wires and tubes, and the doctors couldn’t even tell if he had NEC because his whole insides were green. They created a stoma, and we were told there was little hope.
Every day felt like a battle. We spent 29 days in Princess Anne Hospital after that surgery before we were finally allowed our first cuddle — almost two months after his birth. It was the most precious moment of my life.
When we were transferred back to QA Hospital, Joey’s struggles continued. He faced countless infections, endless scans, and procedures. Doctors told us again and again that things were getting worse. Then his eyes began to deteriorate — Joey developed retinopathy of prematurity (ROP) and had to undergo two procedures to try to save his sight. Sadly, neither worked.
After his laser eye procedure, Joey’s condition suddenly declined. He developed a severe infection due to poor care of his stoma, leading to sepsis and a blocked bowel. He was rushed back to Southampton for emergency surgery that was expected to take two hours — it took nine long, terrifying hours.
When the doctors finally came out, we heard the words no parent should ever have to hear — Joey had just 1% chance of survival. We rushed home to grab our things, but within minutes the phone rang: “He’s not going to make the next half hour. Get back as soon as possible.”
My heart broke. My baby was six months old. We had already been through so much, and I wasn’t ready to lose him. When we reached the hospital, Joey was surrounded by a team of doctors desperately trying to keep him alive. His heart had stopped pumping properly, he lost oxygen, and he suffered further brain damage.
But once again — Joey fought back.
After almost six months in hospital, he was finally discharged home in March 2023. We thought things might settle, but Joey’s journey was far from over. Just two weeks later, he went in for a stoma reversal surgery, which was thankfully successful. But soon after, we were told he had developed cataracts, likely as a result of his earlier trauma and surgeries.
We were referred back to Southampton for surgery to remove them, but it couldn’t be completed — his eyes were too damaged. Joey had to be transferred to Oxford Hospital, where the only specialist surgeon in the UK could attempt to save what little sight he had left. Sadly, even this wasn’t possible.
Today, Joey is completely blind, only able to tell the difference between light and darkness.
In his short life, Joey has already endured over 17 surgeries. He lives with Stage 5 Cerebral Palsy, global developmental delay, microcephaly, epilepsy, and Erb’s palsy in his left arm, which means he can’t use that arm — only his fingers and hand. He also has a PEG feeding tube, as he can’t eat enough food to grow properly. After one of his surgeries, the anaesthetic caused further brain damage, and he even forgot how to swallow — a skill we are still trying to reteach him.
Joey’s epilepsy is so severe that even a common cold can cause him to go into an induced coma. Every day is unpredictable. Every moment is precious.
He requires constant care — 24 hours a day, 7 days a week. Every feed, every medication, every therapy session must be timed and monitored. We live our lives around hospital appointments, emergency trips, and the never-ending cycle of care.
I cannot return to work because Joey needs me every moment. The financial strain is incredibly hard — the cost of specialist equipment is overwhelming. His custom chair alone cost over £1,000, and that was the smallest size. As he grows, we’ll need new equipment, hoists, and eventually home adaptations to keep him safe and comfortable.
But even with all these challenges, Joey is our light. He smiles, he laughs, he fills every room with love. He has defied every medical prediction and continues to show strength beyond comprehension.
Joey-Lee was born extremely premature at 23 weeks and 4 days, weighing only 700 grams. He has evolving cerebral palsy (GMFCS V), is registered visually impaired, and suffers from retinopathy of prematurity with vitreous haemorrhage, bilateral cataracts, and bilateral aphakia. He has previous chronic lung disease, gastroesophageal reflux, and constipation.
He has a gastrostomy for feeding and Left Erb’s Palsy, causing weakness in his left arm. Joey also has global developmental delay, microcephaly, and MRI changes secondary to bilateral intraventricular haemorrhage, with abnormalities in multiple brain regions, including the basal ganglia, thalamus, and brain stem.
Every single penny will go toward giving Joey the medical support he needs — helping him experience comfort, safety, and joy in a world that has given him every reason to give up, but which he refuses to.
Joey’s story is one of hope, strength, and love. He has fought every battle that came his way — and he continues to fight, every single day.
