Woman whose baby was diagnosed with rare disease warns of ‘terrifying’ symptoms

Ella Castle-Parker’s child Caleb shares the same rare disease as cleaning influencer Mrs Hinch’s son

(Ella Castle-Parker / SWNS)

A woman whose young child was diagnosed with the same rare disease as Mrs Hinch’s son described her little boy's battle as a ''terrifying experience''.

Ella Castle-Parker's son, Caleb, one, was diagnosed with Kawasaki Disease (KD) in November 2022 after he developed bloodshot eyes, visible rashes, and redness on his lips.

KD is a potentially life-threatening condition, usually found in children under five, which causes swelling of the blood vessels throughout the body.

Ella and her partner, James Elderkin, both 28, visited Croydon University Hospital A&E, but were sent home and asked to return if the symptoms persisted.

Two days later his condition deteriorated when he developed a constant 40-degree fever, as well as swollen hands and feet.

The young couple rushed their son back to A&E, where three heart scans within 24 hours led doctors to diagnose KD, a condition so rare it affects just eight in every 100,000 children in the UK each year.

Influencer Mrs Hinch recently announced on Instagram that her son, Ron, three, is also suffering from KD, after he was rushed to hospital.

Ella, who works as the head of sales for a travel company, from Croydon, south London, said: “Our experience is very similar to Mrs Hinch's in the sense that it was something I’d never heard of before and had no idea it could even be treated.

''It was terrifying. Our son was born 10 weeks premature - we felt we were out of the woods - and all of a sudden he’s got a rare disease nobody knew how to deal with.

“Having Caleb get so poorly so quickly before our eyes is an experience I would not wish on my worst enemy.”

(Ella Castle-Parker / SWNS)

Caleb was admitted to a high dependency ward and received high doses of immunoglobulin (IVIG), a pooled antibody used to deal with the inflammation resulting from KD.

This treatment was pumped into him via IV drip and is the standard treatment option for the condition. Ella’s son stayed in the hospital for a total of five days, getting better in a matter of hours after starting treatment.

Although doctors told the family they were confident they had caught it quickly enough, they warned it could damage the tot’s heart for life.

Ella added: ''Only one of us could stay with Caleb and we felt really isolated. We were in a bubble and nobody in the family could help us because they weren’t allowed to visit.

''I can’t thank the staff enough for not only spotting such a rare disease, but treating it so swiftly and taking us seriously from the get go — we’ve minimised the chance of it having a lasting impact.''

The young mother reached out to Sophie Hinchliffe, also known as Mrs Hinch, after finding out via social media that her son was suffering from the same condition.

She said: “I really feel for her as we've had the exact same experience, it's horrible. You have to trust your instincts if you think something is wrong with your baby. You have to push until someone acknowledges it.

“There are a lot more people that have gone through it than you expect.”

(Ella Castle-Parker / SWNS)

On Instagram, Mrs Hinch described the whole experience as a “real life nightmare” to her Instagram followers, on 20 November 2023.

She said: “We paced rooms and corridors for days just waiting for an answer, a result, anything. Seeing Ron this way kicked me with a fear and desperation I’ve never felt in my whole life.

“This past week has shaken our whole world as a family.”

Although Caleb will need heart monitoring until the age of five, he does not require ongoing medication and is expected to reach all his milestones.

Caleb’s father has even joined Kawasaki Disease UK, a national charity dedicated to the condition, firstly as a volunteer, and now as an administrator, and hopes to raise awareness about the disease.

The couple got involved with the charity after Ella had to stop working to be able to care for her child. Although she is now back at work, she has thanked the charity for the help they provided.

She said: “We weren’t going to be able to pay for our bills come December as I'd had to stop working for a few weeks to care for our son. They kept us going with a £500 bursary.”

The traumatic experience has had a ''profound effect'' on their lives.

Ella said: “Even now, we feel like we are holding our breath, praying that every future heart scan comes back showing no lasting damage. It’s like a nightmare.”

SWNS