The father of a six year old diagnosed with a brain tumour is calling for greater national investment in research into the disease.
Seth Heighway was diagnosed with a brain tumour in 2022, after he started dragging his right foot and struggling to use his dominant hand.
His dad, Chris, said: “A brain tumour was the last thing on my mind. Seth was always falling over, so when he started dragging his foot I thought he had probably just hurt himself. The phone call from school was when things became more worrying. He is right-handed, but he was using his left hand to physically move his right hand while he was trying to write. Looking back, there were the headaches too, but at the time we never imagined all of these things could mean something so serious.
“When we were told they suspected a brain tumour, our lives crumbled. I knew what a brain tumour was, but you never think it is going to happen to your own family.”
The tumour, a slow-growing pilocytic astrocytoma, was located on Seth’s brainstem, meaning it could not be safely removed by surgery.
Whilst undergoing chemotherapy, Seth developed serious breathing difficulties. Doctors discovered his vocal cords had stopped working and his airway was severely restricted. His treatment was changed and Seth spent three weeks on a ventilator in intensive care before living with a tracheotomy for several months.
After Seth’s treatment was changed, his vocal cords began working again and his tracheotomy was eventually reversed. As treatment continued, MRI scans showed the tumour was shrinking.
Seth’s biopsy scar and thumbs up in hospital after treatment
Now 10, Seth’s tumour is stable and monitored with yearly MRI scans.
“I’ve never known such a brave little lad. What he went through at that age, with the operations, chemotherapy, intensive care and tracheotomy, I don’t know how I would have coped with it myself,” said Chris.
“Seeing him riding his bike now means everything. He can run around and do most things other children can do. We know the tumour could change, but for now it is stable and we take every bit of good news we can get.”
Earlier this month, Chris completed the iconic Great North Run, raising an incredible £1,500 for Brain Tumour Research.
He added: “Seth follows the fundraising and wants the money to help other people who have what he has. That means a lot to me. I want more research to mean better treatments and a better future for children like him. I’d tell anyone making decisions about funding to visit a children’s hospital and see what families are going through for themselves. Once you see it first-hand, it changes your life forever.”
Seth and Chris
Find out more about our work to improve treatments and find a cure for childhood brain tumours, and how you can support that work, by visiting our Childhood Cancer Awareness Month page.
Related reading:
- Take on a challenge for Brain Tumour Research
- Read about our work to find a cure for low-grade brain tumours
