Twin makes incredible gesture for Brain Tumour Charity

Naomi Gywnne, 10, from Hamilton, handmade hundreds of bookmarks to sell at the Christmas fair at Beckford Primary School.

The twin sister of a young boy with two brain tumours as well as severe autism and learning disabilities used her creative skills to raise money for The Brain Tumour Charity.

Naomi Gywnne, 10, from Hamilton, handmade hundreds of bookmarks to sell at the Christmas fair at Beckford Primary School on Friday, November 29.

The bookmarks carried messages including ‘There’s no limit on where you will go’ and ‘Look for your friends when life glitches’, as well as urging others to ‘Keep on reading’.

All proceeds will now be donated to The Brain Tumour Charity, which is dedicated to finding a cure for the number one cancer killer amongst children and adults under 40 years old.

Naomi’s twin brother, Isaac - who has the genetic condition Neurofibromatisis 1 (NF1), which causes tumour growth - was diagnosed with a brain tumour on his frontal lobe in the summer of this year during a six-monthly routine MRI scan.

He had already been diagnosed with an optic glioma two years ago which affected his vision, and with epilepsy.

Having seen the huge impact which the brain tumours have had on her twin brother’s life, Naomi – who also has autism and suffers from anxiety - is helping him in any way that she can, including by supporting The Brain Tumour Charity.

Proud mum Miriam said: “This has been the loneliest and most stressful time ever for us as a family but Naomi has been fabulous.

“Despite her own autism, anxiety and selective mutism, she is incredibly protective of her brother. Seeing him so ill and looking different really upset and distressed her. She became tearful, angry, struggled to eat and sleep and wants him with her all the time. She felt his pain.”

Miriam and her family are sharing their story as part of their ongoing support for The Brain Tumour Charity, which provides practical and emotional assistance for those affected as well as funding research into the disease.

Miriam added: “Brain tumours affect an entire family for life – it’s never the same again as you don’t recover from it but you just learn to adapt. We’re all so much more aware of how fragile life is now.

“But it has bonded us all too and the future is still positive for us.

“Isaac brings joy to everyone he meets, as well as through my blog, and Naomi is changing the world with her love and compassion. Together, we will grow stronger and use our experience to help others.”

Issac’s brain tumour diagnosis came after he had increasingly been suffering with severe lethargy, seizures and regular sickness which led his family to fear the worst.

His symptoms were originally attributed to his epilepsy and other ongoing medical conditions.

However, Isaac’s mum, Miriam, knew that something else was wrong, despite Isaac’s inability to communicate verbally.

She said: “I just couldn’t shake the feeling that something wasn’t right. My suspicions were confirmed when, after a regular MRI, Isaac’s neurologist told me that they had found a tumour and that they wanted to cut my son’s head open as soon as possible.”

Two weeks later, Isaac had another scan and a six-hour craniotomy to take a biopsy.

Isaac was then diagnosed with cortical dysplasia, which is when developing brain cells don’t reach their intended location. This is now being regularly monitored for any changes which may require additional treatment.

Isaac needed more than three months off his specialist school to recover from the surgery.

He now has six-monthly MRI scans and check-ups with his neurologist as well as annual checks with his neurosurgeon.

“He also takes daily epilepsy medication which leaves him confused, lethargic and sick.

The Brain Tumour Charity is the world’s leading brain tumour organisation and the largest dedicated funder of research into brain tumours globally.

Chief executive Sarah Lindsell said: “Isaac’s experience shows so clearly the devastating and far-reaching impact of a brain tumour not only on the person diagnosed but on their family and those around them.

“It is truly inspirational to see Naomi’s determination to help her brother – and others affected by a brain tumour diagnosis - under difficult circumstances.

“We are immensely grateful to the family for sharing their story with us to help raise awareness of brain tumours.

“We wish Naomi all the very best with her amazing fundraising efforts and the whole family all the best for a positive future.”