THE story of a boy from Barry who died of a brain tumour aged just 12 has inspired a book to help families impacted by the condition.
In July 2017 11-year-old Finn McCabe's mum and dad Joanna and Lee took him to the opticians after he said he was experiencing double vision.
Finn was referred to the University Hospital of Wales for an emergency MRI scan, where he was diagnosed with diffuse intrinsic pontine glioma (DIPG); a highly aggressive brain tumour which is difficult to treat and considered terminal on diagnosis.
Finn remained hopeful and positive, while receiving life prolonging treatment, but died on July 20, 2018 – four weeks before his thirteenth birthday.
At the time his sister-in-law, Alana Frassinelli, was 32 weeks pregnant with Luca, who is now three.
Now, the 25-year-old has published A Guardian In The Sky which will share Finn's memory with the nephew he never got to meet.
Ms Frassinelli said:
“It took around 18 months after Finn’s death for me to complete the book.
"I found the process cathartic, helping me through my grief, which was delayed due to the birth of my son, Luca Finn.”
She’d been performing in a musical in 2017 when she heard the news of Finn’s tumour which was inoperable.
“Advice from the doctors was as blunt as ‘take Finn home with this medication and make some memories’,” she said.
“My hope is that by sharing Finn’s story, I can help loved ones talk to their young children and family members about loss and help keep the memory of that person alive.”
A Guardian in the Sky – which includes rhymes and illustrations – explains brain tumors in a child-friendly and understandable way.
Since Finn’s death, the family set up Finn’s Foundation which gives cash grants to families of children with terminal illnesses to try and lift the burden of financial worries during end-of-life care.
20 per cent of all donations go straight into DIPG research.
Brain tumours kill more children than any other cancer, yet historically just one per cent of the national spend on cancer research has been allocated to brain tumours.
Find out more about Finn’s Foundation online at www.finnsfoundation.org.uk
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