Thor is 1 of just 3 people in world with rare condition

BRAVE tot Thor Scragg needs 24-hour care – after being diagnosed with an extremely rare metabolic disorder.

The 18-month-old was rushed to hospital by his frantic parents in August when his body ‘went floppy.’

But as his condition deteriorated he was taken into resuscitation and intensive care with suspected liver failure – and his mum and dad were told to prepare for the worst.

The Leek toddler spent three weeks in hospital – both at the Royal Stoke and Birmingham Children’s Hospital – and had

250 blood tests before he was eventually diagnosed with an extremely rare disorder called PEPCK Deficiency.

It is believed only three other people in the world have been diagnosed with this condition. Thor is the only one in the UK.

Mum Jemma, aged 27, said: “We initially thought it was because he was teething, but when he started to go floppy we knew something wasn’t right. When we got to the hospital he was unresponsive and he had sepsis in his blood.

“When he was in intensive care the nurses told us to sit down because they didn’t know whether he was going to make it. I don’t think either of us really knew how poorly he was until that point.”

Dad Chris said: “We were told we needed to stay by his side because doctors just didn’t know what was going to happen.” A PEPCK deficiency causes an excess of acid in the circulating blood, resulting in low blood sugar, low muscle tone and liver impairment.

It also prevents a child’s ability to grow normally and increases the risk of them needing an organ transplant in the future.

Thor has also started to suffer from seizures brought on by the condition – meaning he now needs round-the-clock care.

Jemma, who is a care assistant, said: “Thor has a really extreme case which is difficult because it is such a rare disease that not many people know about.

“We have been told it’s maintainable but not curable.”

Thirty four-year-old Chris, who works as a plasterer, added: “Fortunately, kids are very resilient and Thor is taking it all in his stride. Our other children know that he’s not very well and he needs to be looked after.”

Earlier this month the couple – who live in Frith Street and have four children together – staged a fundraiser in aid of the Birmingham Children’s Hospital which raised more than £1,300. The event, at The Britannia Inn, in Leek, included a darts knock-out competition, live bands and an auction.

Mick Pratt, co-owner of The Britannia Inn, organised the event. He said: “When we heard about Thor we wanted to raise some money for the hospital.

“I raised some money for charity in the past for my son who had cancer. Unfortunately he didn’t make it but we still wanted to help.

“The people and the businesses in Leek have been so supportive and generous.

“They were happy to donate some really good prizes for the auction and raffle.”