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“We would not have wanted to go ahead if Jesse wasn’t there - he is our world” - Carbrooke couple’s joy that their brave ‘little soldier’ is well enough to be a page boy at their wedding

PUBLISHED: 11:28 01 May 2017 | UPDATED: 11:34 01 May 2017

Jesse Langford-Daley with his parents Anneka Daley and Michelle Langford.
Photo: supplied by Anneka Daley.

Jesse Langford-Daley with his parents Anneka Daley and Michelle Langford. Photo: supplied by Anneka Daley.

supplied by Anneka Daley

A couple whose lives were turned upside down when their son was diagnosed with a brain tumour have spoken of his bravery and their delight that their “little soldier” was well enough to be a page boy at their wedding.

Tuddenham Mill. Picture: contributed. Tuddenham Mill. Picture: contributed.

Jesse Langford-Daley, who turned one on April 22, has been battling a rare atypical teratoid rhabdoid tumour, and other complications led to him having an emergency four-and-a-half-hour operation last Wednesday.

The youngster is recovering well from his latest surgery, and with the help of staff from the Norfolk and Norwich University Hospital, he was able to attend the wedding of his parents, Anneka and Michelle Langford-Daley, 32 and 31, at Tuddenham Mill, near Newmarket, yesterday.

“We would not have wanted to go ahead if Jesse wasn’t there - he is our world. We were desperate to share his last name - because he was already a Langford-Daley. It is really special for us to complete the jigsaw of our family,” said Anneka.

Two nurses from the Norfolk and Norwich University Hospital looked after Jesse throughout the wedding, and Anneka said both her and Michelle were so grateful for the hospital’s help.

Jesse’s Rollercoaster ride with ATRT

Anneka and Michelle have set up a Facebook page to share Jesse’s story.

They have called it Jesse’s Rollercoaster Ride with ATRT because they said “when Jesse was diagnosed with ATRT, we boarded the rockiest rollercoaster we’ve ever ridden.” Below are some of their posts:

April 27: “Jesse was in surgery for 4 1/2 hours - a new line inserted and a Peg-J put in and he is now recovering....we are not out of the woods yet but our little soldier showed his strength again yesterday.....and we couldn’t be prouder!”

April 27: “Our man trying to recover from his surgery. He is so strong.”

April 28: “So the plan today is that Jesse needs a blood transfusion to help him pick up a bit as his counts are low.”

April 29: “It’s unbelievable how our boy keeps showing his strength. In just a matter of days he is off his oxygen, smiling and playing again. And the best part....we can see his beautiful face with no tubes for the first time since his diagnosis!”

It was in January this year when the couple, who live in Carbooke, near Watton, first noticed there was a problem with Jesse’s health.

Anneka said: “He just wasn’t himself. He was a really active little boy and didn’t really like to have much sleep, and he became the total opposite and was very lethargic.

“It started off with cold-like symptoms, and that progressed to him being really lethargic, and then his eye stopped closing as he developed facial palsy.”

She said from the beginning of January the family had been backwards and forwards to the Norfolk and Norwich University Hospital, and it was the following month that Jesse was diagnosed with the tumour that was about 7cm by 9cm in size.

“We found out on February 10 and he was rushed to Addenbrooke’s Hospital in Cambridge the same day and operated on through the night. They removed 95pc of the tumour,” said Anneka.

She said the operation lasted an agonising seven-and-a-half hours.

“I don’t think either of us really remember what we were thinking during that time. We were in total shock. We were scared witless. It was such a shock and came out of nowhere.”

After the surgery they were told that the tumour, which had been pressing on Jesse’s brain stem, had damaged some of the nerves in his brain, affecting the movement down the left side of his face and also meaning he can no longer swallow and digest food, and instead needs to be fed via a central line.

Further complications happened last Monday when - on the same day an MRI scan revealed that the remaining part of the tumour had thankfully not got any bigger - Jesse’s central line developed problems and the youngster subsequently went into respiratory arrest two days in a row.

He had to endure a four-and-a-half-hour operation to have a new line and a PEG-J (a tube with two ends, one leading to the stomach and one to the bowel) fitted on Wednesday last week.

But despite all of this the inspiring youngster was on Saturday smiling and well enough to play, and yesterday he was the most important guest at his parents’ wedding day.

Anneka said: “He is absolutely amazing, he is incredible.

“I think most of us adults would still be lying flat on our backs after the first operation, let along everything else he has been through.

“He has got a long way to go but he is an absolute trooper.

“Proud doesn’t really do justice to how we feel, but we are the proudest parents.”

WHAT IS AT/RT?

AT/RT stands for atypical teratoid rhabdoid tumour.

It is described as a very rare

but fast-growing tumour of

the central nervous system which usually occurs in childhood.

The tumour can occur anywhere in the brain or the spinal cord and the symptoms vary according to its location, making it more difficult to diagnose.

AT/RT is responsible for about 3pc of all paediatric brain tumours.

The AT/RT tumour can be associated with mutations in a specific gene and these changes can occur spontaneously or they can be inherited.

However, reports to date of

the tumour in more than one family member are extremely rare.

To find out more information about AT/RT, visit the Brain Tumour Research website online at www.braintumourresearch.org

Another useful website is Brainstrust at www.brainstrust.org.uk

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