The TikTok mum helping others from her son’s bedside in an Edinburgh hospital

Kobi Crolla is not yet 18 months old but he has spent almost all his life in hospital as medics treat him for severe brain damage.

In that time he has suffered countless seizures and endured 17 operations, while his parents have had to give up their jobs to care for him full-time.

Now his mother Kirsty Grandison, 35, is charting their experience on TikTok in a bid to help other parents of sick children in hospital.

“We used to feel like we were the only parent’s going through this,” she said

“There was no-one online making videos where we could go for advice, so I started making videos to show life in hospital in a bid to help other people.”

Her TikTok page has 34,000 followers and receives up to 40 private messages a day.

Kobi was born 10 weeks prematurely at the Royal Hospital for Children and Young People in Edinburgh on 17 July 2024.

Despite weighing just 3lb 3oz, his parents initially thought he was doing well.

However, that night doctors “came pouring” into his hospital room in Edinburgh as his tiny lung had collapsed and he had stopped breathing.

Then Kirsty, 35, and her partner Daniel Crolla, 38, received the news “that changed everything” – Kobi had had a grade four brain bleed, the most severe kind.

They were told he would not have any quality of life and they should prepare for the worst and call their family to say their goodbyes.

Against all odds, Kobi pulled through and eight “agonising” days later, they finally got their first cuddle with their son, which felt like a “miracle”.

But his parents said his “battles kept coming” with Kobi developing meningitis and each day bringing a new fear with blood transfusions, lumbar punctures and scans.

“He was having up to 10 seizures a day. We were always panicked, always so scared for him. We still are,” said Kirsty.

Kobi was diagnosed with hydrocephalus that causes a dangerous build-up of fluid on the brain.

The only option was brain surgery, to install a shunt to allow fluid to be drained from the brain – since then, Kobi has endured 16 surgeries.

“That’s 16 times we’ve handed him over, not knowing if he’d come back,” Kirsty said.

Both Daniel, a bus driver, and Kirsty, a carer, have given up their jobs to care full-time for their son.

And Kirsty is using her TikTok page – Kobi The Brave – to give followers a glimpse into the reality of life in a sick kids’ unit.

She shows where she buys specially-adapted vests to fit around his feeding tube, how to clean his feeding peg, showing them medicines and setting up Kobi’s feeding pump and changing his bed.

“I get messages from other parents in neonatal saying my videos are getting them through and how it’s making them not give up hope because they have seen how far Kobi has come from my videos and how well he does despite what he’s been through,” Kirsty said.

“I want to take all these followers on this journey as I know how many it can help.”

Kirsty said caring for Kobi was the “greatest privilege in the world” but it was exhausting, relentless and a lonely journey.

She plans to continue documenting Kobi’s story in a bid to help other parents know there are other people going through a similar experience.

“We don’t remember the last time we felt at ease, content,” Kirsty said.

“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?'”

Kirsty and her two children from a previous relationship live in Prestonpans, East Lothian, with Daniel, who has three children.

They take it in turns to stay in the hospital with Kobi day and night.

“We’ve grieved the life we thought we’d have with Kobi,” Kirsty said.

“It’s hard not to feel jealous sometimes. You see people worrying about hand prints on the walls or toys all over the floor. We’d give anything for that kind of normal.”

Now the family are hoping they can have their “cheeky and determined” Kobi at home with them for Christmas, away from the beeping machines and clinical smells of hospital.

“We will be on edge worrying and thinking what might go wrong,” said Daniel

“His head can double in size instantaneously and we have to rush him back to hospital, you see all the veins in his head and it’s like a balloon.

“It’s very traumatic and we are constantly in a fight or flight mode.

“But when the fear feels overwhelming, his smile pulls us back.

“As a family, we can count on one hand the number of days we’ve had out together.

“That’s all we want – more time, more chances to make memories.”

The family are being helped with the hidden costs of hospital life by the Edinburgh Children’s Hospital Charity.

Pippa Johnston, deputy chief executive officer at Edinburgh Children’s Hospital Charity, said Daniel and Kirsty had shown “so much courage and resilience in the face of such unimaginable hardship and uncertainty”.

“While many people will be heading home to be with their loved ones, the sad reality is that many children like Kobi, and their families, will spend the festive season in hospital,” she said.

“No-one should feel like they’re facing hospital alone, especially at Christmas.

“Alongside our friends in the NHS, we’ll be there to bring reassurance, comfort and unexpected moments of joy when they’re need most.”