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

Kobi Crolla isn’t but 18 months outdated however he has spent nearly all his life in hospital as medics deal with him for extreme mind injury.

In that point he has suffered numerous seizures and endured 17 operations, whereas his mother and father have had to surrender their jobs to look after him full-time.

Now his mom Kirsty Grandison, 35, is charting their expertise on TikTok in a bid to assist different mother and father of sick kids in hospital.

“We used to feel like we were the only parents going through this,” she stated.

“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 web page has 34,000 followers and receives as much as 40 personal messages a day.

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

Despite weighing simply 3lb 3oz, his mother and father initially thought he was doing effectively.

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

Then Kirsty, 35, and her associate Daniel Crolla, 38, acquired the information “that changed everything” – Kobi had had a grade 4 mind bleed, probably the most extreme type.

They have been instructed he wouldn’t have any high quality of life and they need to put together for the worst and name their household to say their goodbyes.

Against all odds, Kobi pulled by way of and eight “agonising” days later, they lastly received their first cuddle with their son, which felt like a “miracle”.

But his mother and father stated his “battles kept coming” with Kobi growing meningitis and every day bringing a brand new worry 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,” stated Kirsty.

Kobi was recognized with hydrocephalus that causes a harmful build-up of fluid on the mind.

The solely possibility was mind surgical procedure, to put in a shunt to permit fluid to be drained from the mind – since then, Kobi has endured 16 surgical procedures.

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

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

And Kirsty is utilizing her TikTok web page – Kobi The Brave – to provide followers a glimpse into the truth of life in a sick youngsters’ unit.

She exhibits the place she buys specially-adapted vests to suit round his feeding tube, the way to clear his feeding peg, exhibiting them medicines and establishing Kobi’s feeding pump and altering his mattress.

“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 stated.

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

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

She plans to proceed documenting Kobi’s story in a bid to assist different mother and father know there are different individuals going by way of the same expertise.

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

“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 kids from a earlier relationship reside in Prestonpans, East Lothian, with Daniel, who has three kids.

They take it in turns to remain within the hospital with Kobi day and night time.

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

“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 household are hoping they will have their “cheeky and determined” Kobi at house with them for Christmas, away from the beeping machines and scientific smells of hospital.

“We will be on edge worrying and thinking what might go wrong,” stated 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’re continually in a combat or flight mode.

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

“As a household, we are able to rely on one hand the variety of days we have had out collectively.

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

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

Pippa Johnston, deputy chief government officer at Edinburgh Children’s Hospital Charity, stated Daniel and Kirsty had proven “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 stated.

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

“Alongside our mates within the NHS, we’ll be there to convey reassurance, consolation and surprising moments of pleasure after they’re want most.”