LITTLE CALLUM HAS TO BE FED THROUGH A TUBE

Now mum Toni is raising funds to send her boy to Great Ormond Street Hospital for surgery

FOR little Callum James every meal time is a struggle, as for nearly all of his life he’s been fed via a nasogastric tube. The toddler, who has been diagnosed with silent reflux, often finds meal times distressing and regularly pulls out the tube.

Now his mother, who faces a constant struggle to feed him, is battling to raise more than £10,000 to pay for a life-changing operation for the 14-month-old.

Toni Thomas, from St Julians, Newport, is hoping Callum will undergo an operation which would fit a peg to his stomach through which he will directly receive much of his daily nutrition.

The 37-year-old said Callum, who was born at 36 weeks after a planned Caesarean section which ended in serious complications, has been unwell for most of his life.

At around eight weeks old he was admitted to hospital and later diagnosed with reflux, global development delay and delayed visual impairment.

He was also diagnosed with hypertonia, which affects muscle tension, and hypotonia – commonly known as floppy baby syndrome.

“Callum was born at 36 weeks and he was continually ill,” said Toni.

“It was identified in hospital that Callum had severe head lag and very poor head control.

“When discharged Callum became severely ill from five days old and was screaming in pain for up to 20 hours a day.

“He was taken back and forth to the doctors three times a week and his feeds continued to drop and he became more distressed,” added Toni.

“In May 2015 Callum was rushed to hospital and was diagnosed with having silent reflux and put on medication for the condition.

“Callum was unresponsive to this and was still extremely unsettled, in excruciating pain and still screaming in pain.

“I continued to return back and forth to the doctors, with doctors consistently explaining it was colic.

“At his eight-week check-up a doctor was extremely concerned by Callum’s conditions and the number of visits to the doctor.

“Callum was admitted to hospital for almost 10 weeks and received many tests, including a brain scan, and was then diagnosed with cow’s milk protein intolerance (CMPI), reflux, global development delay, delayed visual impairment, hypertonia and hypotonia.”

Since then he has been fed through a nasogastric tube and has a severe food aversion, while he also suffers with a wheat allergy.

Toni is hoping to raise more than £10,000 to send Callum to Great Ormond Street Hospital in London for the operation.

Although available on the NHS, the operation has an 18-month waiting list. Meanwhile, the pair face a daily battle to make sure Callum gets the nutrition that he needs.

“Callum gets so frustrated with his tube that he is constantly pulling it out,” she said.

“It means day-to-day tasks are a battle and I am constantly worrying about making sure he is getting all the nutrition he needs.”

The mum of two said having a stomach peg would change their lives but waiting 18 months was not an option.

“Basically being on the waiting list could mean waiting much longer than that, as emergency cases will also take precedence.

“We need the operation sooner, so Callum can have a better quality of life.

“He has come on leaps and bounds since being in hospital. He’s crawling around and holding onto furniture.”

Toni said Callum’s next chapter was surgery.

“The ultimate plan is to raise £15,000 so I can travel to Great Ormond Street, where Callum can have the operation privately,” she said.

“There is only one consultant in Wales who can carry out the procedure.”

Toni, who said she is helped enormously by Callum’s 11-year-old sister Holly, added: “Callum’s done remarkably well but he’s behind on speech.

“He’s 14 months old but he’s most probably nine months old in certain development.”

The fundraising effort has so far raised £1,200 and was boosted by a sponsored walk last month when Toni and her friend Alexis Bayley took Callum in a pushchair 15.5 miles from Cardiff to Caerleon.

“We have plans for a series of fundraisers over the coming months and are already blown away by the support and encouragement we’ve had from the community,” said Toni.

To donate visit www. crowdfunding.justgiving.com/tonithomas-1 or for more information follow Callum’s Next Chapter on Facebook.