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‘Without research our story would be different’: Aberdeenshire teacher jumps into fundraising challenge for brain tumour awareness

The Jones family.

An Aberdeenshire mum and teacher is jumping into a fundraising challenge to raise money for Brain Tumour Research.

Jenna Jones’ son, Sebastian, was diagnosed with a brain tumour when he was just 15 months old.

Now, after years of treatment, he is “just like a normal seven-year-old”.

To raise money and awareness of the important work carried out by Brain Tumour Research, Mrs Jones is taking on their star jump challenge.

She will do 100 star jumps every day in November to support the charity in its journey to help find a cure for brain tumours.

Sebastian’s journey

Doctors first noticed something was wrong with Sebastian when he was just one.

He was referred to the paediatric ophthalmology team at the Royal Aberdeen Children’s Hospital due to concerns about his vision because his eyes were squinting and wobbling.

An MRI scan showed a tumour on Sebastian’s brain.

Sebastian during treatment.

Mrs Jones, now aged 39, said: “I was filled with terror and fear, and the worst-case scenarios were going around my head.

“My husband, Adam, and I didn’t know anything about brain tumours, so we were faced with lots of unknowns.

“Fortunately, the hospital staff really reassured us and gave us lots of useful information.”

‘You wish so often that you could take it away’

By 2016 the tumour had “grown substantially” and Sebastian had to undergo 18 months of chemotherapy.

Mrs Jones said he responded well to the treatment: “It is horrendous as a parent to watch your child going through this and you wish so often that you could take it away.

“However, despite losing his hair, being sick, and losing his appetite, Sebastian responded really well to the treatment.”

In 2017, a large amount of fluid around the tumour was putting pressure on Sebastian’s brain, forcing surgeons to operate.

Despite thinking it impossible, they managed to remove 80% of the tumour.

Mrs Jones said: “It was amazing because the surgeons had always said that they wouldn’t be able to do that. A huge weight had been lifted.”

Sebastian now, age seven.

‘We feel so lucky’

Mrs Jones is a humanities teacher at Inverurie Academy and also has a three-year-old daughter, Sophia.

She said Sebastian is now like a normal child of his age: “We feel so lucky because Sebastian today is just like a normal seven-year-old.

“He is lively, funny, and full of energy. He does Taekwondo and plays the piano. He’s just fabulous.”

She explained that she is taking part in the star jump challenge for Brain Tumour Research to help other families have the same positive outcome after a diagnosis.

She said: “I’m doing the star jumps challenge to raise money for Brain Tumour Research because research is so important in order for progress to happen. Without research, our story and that of many other families would be very different.

“Brain tumours kill more children and adults under the age of 40 than any other cancer yet historically just 1% of the national spend on cancer research has been allocated to this devastating disease.”

Brain Tumour Research

Brain Tumour Research funds sustainable research centres around the UK and campaigns for the government and larger cancer charities to invest more into researching brain tumours.

As International Brain Tumour Awareness Week comes to an end, please donate to help us get closer to finding a cure for…

Posted by Brain Tumour Research on Saturday, 6 November 2021

Matthew Price, community development manager for Brain Tumour Research, said: “It’s fantastic to have Jenna on board for this exciting new challenge, it’s really inspiring.

“Sebastian’s story reminds us that brain tumours are indiscriminate; they can affect anyone, at any time.

“We are so pleased to hear that he is doing well after going through such an ordeal at a young age. We wish him all the best for the future.”

You can donate to Jenna Jones’ fundraiser here.