Chirnside boy has the world’s rarest tumour

George and Archie McIntosh.
George and Archie McIntosh.

A brave six-year-old boy who is battling an extremely rare tumour is the subject of an international journal by medical experts –the only child in the world to be diagnosed with the condition.

George McIntosh, a former pupil at Berwick’s Holy Trinity CE First School, is fighting a series of inoperable tumours in the central nervous system of his spine and brain.

The condition is known as disseminated olligodendrial leptomeningeal tumour. Only nine adults throughout the globe are known to have it, but George’s case is the first time that medical experts have seen it in a youngster.

And last Thursday, 
the plucky lad from 
Chirnside, along with his older brother Archie, eight, who was born with syndactyly – with two of his fingers fused together – were asked to open a pop-up shop in Edinburgh’s Gyle Shopping Centre.

It will be open until Christmas Eve, raising vital funds for The Sick Kids Friends Foundation (SKFF), which supports and complements the work of the Royal Hospital for Sick Children, Edinburgh – where the siblings have both received treatment and care – as well as other children’s healthcare units across the southeast of Scotland and beyond.

Their mother Julie, 41, admitted that her brave boys, who have both endured major surgery, have been through so much in their short lives and she was ‘choked up’ at seeing them launch the shop.

She admits that life has been tough for the family, including husband Ewan, 38, who works offshore in Africa for a total of six months each year.

She said: “Nothing can prepare you for when you go through something like this and it has totally changed our lives. It has been really hard and it is going to continue to be hard.

“But we have honed in on what is important and we appreciate every day. We have our kids and we enjoy all of the little things with them.” George’s ordeal began on his mum’s 40th birthday, in October 2014. Aged five at the time, he was rushed to hospital after having a squint in his eye and he had surgery to reduce swelling on his brain.

Medical experts originally thought George had tuberculous (TB) meningitis and treated him for this, although this was unconfirmed. But it wasn’t until June of this year, during a routine scan, that they realised it was something else.

Julie said: “They couldn’t pinpoint what was causing the build up of pressure and during a routine scan, they saw that things weren’t developing how they thought they would be if he had TB meningitis. He had a biopsy on his spine and they discovered that it was this extremely rare tumour.

“Thankfully, it is low grade and is not malignant.”

George, who is currently undergoing chemotherapy, has had a number of major surgeries and has had plates and shunts fitted in his head.

“He is full of hardware,” said Julie.

She added: “Because George is the only child in the world who is known to have this, a lot of his treatment is experimental and we just take it day by day.

“He was a puzzle for nine months and now he is unique, and medical experts are working on an international journal which will highlight his condition and his symptoms. I hope it raises awareness for other families.”

George will be travelling to Edinburgh for a scan on Tuesday, before his seventh birthday on Saturday, December 19.

But George isn’t the only one to have endured a tough ordeal.

Brother Archie was born with conjoined fingers, with his little finger and ring finger on his right hand fused together. He has already had two operations – the first at Newcastle RVI to separate the fingers, before a second one two weeks ago to straighten his ring finger.

He will require further surgery, but Julie said that the most recent operation was a success.

Although, Archie did receive some bad news. Julie said: “The doctors said that he had to keep his cast on for another four weeks, which means that he will have it on over Christmas. He wonders how he is going to be able to open his Christmas presents, but I think he will manage!”

While both siblings have gone through so much already, Julie believes that their ordeals have created a special bond between them.

She said: “It has brought them closer. Archie was crying when he had his cast removed recently and George got out of his wheelchair and rubbed his back. And when George has had his chemo and is vomiting, Archie is there for him with the sick bucket.”

Both lads had attended Holy Trinity CE First School, in Berwick, but the siblings have transferred to the primary school in Chirnside.

Archie had his first day yesterday, while Julie hopes that George – who hasn’t been to school for more than a year, but receives tutoring at home – will be able to go to Chirnside soon, although no date has yet been set.

Considering what both lads have been through, Julie was delighted to see them launch the pop-up Christmas toy shop in Edinburgh, in aid of SKFF.

She said: “It choked me up. I was so proud of them and it was nice for them to give something back to help something which has given so much to them. They are fantastic kids and they are a credit to us.”

The SKFF funds medical equipment and research; comforts, distractions and enhanced facilities for children and their families; and family support and play services and innovative art projects.