‘All our hopes were gone’ – Barkway family turn heartbreak over Freddie’s brain tumour diagnosis into fight for funds and awareness

Lynette Tully with son Freddie, who has an inoperable brain tumour.

Lynette Tully with son Freddie, who has an inoperable brain tumour. - Credit: Archant

The family of a seven-year-old boy from Barkway, whose inoperable brain tumour was dismissed by doctors as a food intolerance or behavioural matter, have smashed their initial £2,000 fundraising target for vital research into the disease.

Freddie Tully with little brother Ronnie.

Freddie Tully with little brother Ronnie. - Credit: Archant

Freddie Tully’s mum Lynette became increasingly concerned about Freddie after his first birthday, and she took him to the doctors almost daily.

“As a mother I knew something was seriously wrong, but the doctors insisted it was not a neurological issue and that it may be asthma or lactose intolerance,” she said.

“They even suggested that Freddie was refusing to walk because he was worried about the fact that I was pregnant.

“One day he seemed to have forgotten the actions to his favourite song – ‘Twinkle, Twinkle, Little Star’.

“Over the next couple of months his motor and speech skills deteriorated further.

“He vomited 30 times or more a day, ate and drank ravenously and slept loads.”

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Unsatisfied with the diagnosis, Lynette took Freddie to a private paediatrician who ran some blood tests. He rang Lynette 24 hours later and told her to take her son to A&E immediately.

Following an emergency MRI scan, Lynette and Freddie’s dad Paul were given the devastating news that he had a brain tumour – and that the next 48 hours were critical.

Freddie was transferred to Addenbrooke’s Hospital in Cambridge to have emergency surgery and a shunt fitted to drain the fluid.

Freddie then underwent a biopsy and the family were given the devastating news that the tumour was inoperable due to its location, and untreatable because of a hard calcium shell surrounding the mass.

Lynette – who gave birth to Freddie’s little brother Ronnie, now five, 12 days after the diagnosis – said: “All of our hopes and positive thinking along the way were gone. Freddie was terminally ill.”

Freddie is seven now but developmentally will remain at the stage of a two-year-old.

The family set up The Freddie Tully Fund last year, which is an official supporter of The Brain Tumour Charity and its #WearItOut campaign for Brain Tumour Awareness Month throughout March.

So far, the Tully’s fundraising activities have included endurance races, fire walks and a candle party and they are delighted to have raised more than £3,000.

Lynette added: “We want to raise awareness and funds so that research and clinical trials can advance for all families that are affected by brain tumours, with the hope of one day finding a cure.”

Geraldine Pipping, The Brain Tumour Charity’s director of fundraising, said: “We are immensely grateful to the Tully family for raising awareness and funds.

“We receive no government funding and rely 100 per cent on voluntary donations, so it’s only through the efforts of the Tully family and others like them that we can work towards our twin goals of doubling survival and halving the harm caused by brain tumours.

“Brain tumours are the biggest cancer killer of children and people under 40 in the UK and survival rates have not improved significantly over the last 40 years. We need to change that.”

To take part in the campaign, take a selfie in a specially-designed bandana or create your own and share it on social media with the hashtag #WearItOut to help raise awareness.

To donate go to www.justgiving.com/fundraising/Freddie-tully6