Kobi's Story
“We still hadn’t held our baby, and now they were asking us to say goodbye.”
Little Kobi was born at just 29 weeks, weighing only 3.3lbs.
At first, everything seemed fine. Then, in the middle of the night, doctors rushed into the hospital room. It was terrifying for his parents Kirsty and Daniel.
Kirsty said: “Our baby’s tiny lung had collapsed. He wasn’t breathing. And then the news that changed everything – he’d had a grade 4 brain bleed, the most severe kind. He wouldn’t have any quality of life, they said. We should prepare for the worst, call our family in.”
Against all odds, Kobi pulled through.
“Eight agonising days later, we finally got our first cuddle with him. It felt like a miracle.
“Still, the battles kept coming. Kobi developed meningitis. Each day brought a new fear: blood transfusions, lumbar punctures, MRIs. He was having up to 10 seizures a day.
“We were always panicked, always so scared for him. We still are.
“Eventually we got a diagnosis: hydrocephalus – a dangerous build-up of fluid on the brain. The only option was brain surgery to install a shunt. This was just the beginning.
“Since then, our boy has endured 16 surgeries. Sixteen times we’ve handed him over, not knowing if he’d come back.
Life as Kobi’s parents is a constant state of fight-or-flight. He’s never just a wee bit poorly. We can never breathe out, never let our guard down.
Kirsty, Kobi's mum
“Caring for Kobi is the greatest privilege in the world. But it’s exhausting and relentless. And it’s such a lonely journey.
“We don’t remember the last time we felt at ease, content. We used to have little bits of ourselves outside all this: football, the gym. Now, we go days without having a shower. Sometimes, you wish someone would ask, ‘But how are you?’
“The financial strain is crippling. Living in and out of hospital, travelling back and forth to East Lothian, paying for food, taxis, the upkeep of a house we barely see. Our savings are vanishing. And it’s likely we’ll never work again.“
Facing hospital alone is terrifying. But thanks to your support, ECHC has been there for Kobi and his family.
“The support we’ve received from ECHC is what’s keeping our family together. The charity’s Hub has been a godsend – especially for Hope, Kobi’s big sister. It gives her space away from the beeping machines, the clinical smells, the constant worry. It allows her to be a kid again.
“The team has helped her to cope and helped us as parents too. Just having someone who listens, who really understands what you’re going through. It’s been a lifeline.
“Without ECHC, we would have had to face all this alone. They’ve been here for us every step of the way. But we’re the lucky ones.”
