“To me, it’s a miracle stitched together by love, luck and the stubborn will of a tiny baby.”
First at two weeks old and then again at two months old, James fought for his life against meningitis.
It left him with an acquired brain injury but didn’t kill his spirit. Today he is 29 years old and achieving things his family never thought possible, as his mum, Sharon, from Southwater in West Sussex, tells us here.
“When Jacob was just two weeks old, our world changed in a way I never expected.
“He had pneumococcal meningitis – the rare, severe kind that most parents never hear about until it arrives at their door.
“He was tiny, fragile, and only just beginning his life. He was very sleepy, had to be woken for feeds, was feeding small amounts, and had cold hands and feet and a bulging fontanelle.
“The doctors moved quickly around him. Their faces were serious. Their voices were calm but urgent. They were watching him closely, doing everything they could.
Possibility of losing him was real
“He didn’t need a ventilator that first time, but we were told that he was seriously ill. The fear was real. The danger was real. The possibility of losing him was real.
“But somehow, he survived. We brought him home, shaken but grateful, believing the worst was behind us.
“But at two months old, the nightmare returned – harder, faster and far more severe.
“This time, Jacob’s tiny body couldn’t keep going on its own. He had complications, including multiple seizures, hydrocephalus and septic shock. This time, he was placed on a ventilator. This time, the local hospital looked at me with heart-breaking honesty: ‘We are doing all we can. He may not make it.'
Numbers on screens blur through tears
“I watched machines breathe for him. I watched numbers on screens blur through tears. I watched the world shrink down to one tiny baby fighting for his life.
“Then the St Mary’s retrieval team arrived – calm, skilled, steady. They took over. They stabilised him. They transferred him safely.
“And once again, against all odds, Jacob stayed.
“Twice in two months, my baby fought something most parents never face once. Twice, I stood on the edge of losing him. Twice, he chose to stay in this world.
Meningitis didn’t leave quietly
“Meningitis didn’t leave quietly. It left complications. It left an acquired brain injury. It changed how his brain grew. It made life harder for him – louder, faster, more confusing. It made planning hard. It made conversations hard. It made everyday life something he has to work at.
“But it didn’t take away who he is. Jacob grew up gentle. He grew up kind. He grew up patient and steady. He grew up with a quiet strength that comes only from surviving the impossible.
“And today, 29 years later – despite everything he went through as a newborn – he:
• works full‑time
• drives an HGV
• lives with support, not limits
• has no seizures
• has no deterioration
• has a stable, good adult life
A miracle stitched together by love
“Doctors call his outcome ‘unusual.’ But to me, it’s a miracle stitched together by love, luck and the stubborn will of a tiny baby who refused to leave.
“I share Jacob’s story for the parents who are living the nightmare right now – the ones sitting beside ventilators, the ones hearing words no parent should ever hear, the ones holding onto hope with trembling hands.
“I know that fear. I know that silence. I know that moment when the world stops.
“And I also know this: Hope doesn’t always roar. Sometimes it whispers. Sometimes it flickers. Sometimes it’s a tiny baby who keeps fighting when no one knows how.
Story of survival
“Jacob’s story is one of survival. Yours will be its own kind of brave.
“Jacob needs support, routine and understanding. But he’s also achieved things we never thought possible.
"The impact is lifelong, but so is his strength. But the emotional scars for me as his mum have never left.”
