Parents from village on Rutland border need £150,000 for 'life changing' treatment for son, 3, diagnosed with incurable brain tumour

A couple whose three-year-old son has an incurable and inoperable brain tumour are raising funds for treatment to give him an “opportunity to be excited about a future”.

Sebastian Grimwood-Bird, born in 2019, was diagnosed with a glioma brain tumour on the centre of his brain in January 2021.

This is also wrapped around the optic nerves, leaving Seb blind in his left eye.

After being diagnosed at only 16 months old, he had to undergo more than 18 months of chemotherapy and continues to have MRI scans and eye tests every three months.

His parents, Emma and Daniel, who live in a village on the Rutland border, are trying to raise £150,000 for their little boy to receive immunotherapy, which they say is only available in the United States.

Research suggests the treatment would attack the tumour and allow his brain to recognise and attack the tumour cells.

Seb’s tumour is inoperable and incurable, but this treatment “could be life changing" for him and gives him the “opportunity to provide his body the defence to fight it himself”, said Emma.

She added: “Without this treatment we know he will need more chemotherapies, immunotherapies and potential radiotherapy which will have short- and long-term side effects.

“But also, as a family, we can’t plan life past the next scan, resulting in us having to live life in three month blocks. This new treatment isn’t just about curing the tumour, it’s about providing him an opportunity to be excited about a future.”

Emma said 'the bottom fell out of our world' when she and Daniel were first told about Seb’s diagnosis and thought they would 'never be happy again'.

“[It’s] like something had been robbed from us. We used to be so very excited about the future, but now the future is very anxiety inducing.”

The first six months of Seb’s treatment were 'exceptionally hard', she said.

The parents spent those months in Queen's Medical Centre, Nottingham, with Seb as a result of brain surgery complications.

The pandemic proved a harder time for the family, with Seb still in hospital, as only one parent was allowed to visit, so the couple had to 'grieve and process everything separately'.

As a result of chemotherapy, he lost his hair and had to be tube-fed for 18 months.

He also suffered from neuropathy, which is muscle weakness and pain in his legs.

Emma said: “It’s all very difficult for a two-year-old to explain, so it was difficult to work out how he was feeling a lot of the time.”

Despite the pain he has endured, Emma describes Seb as the 'funniest little chap who is always looking to make others laugh'.

She added: “He’s incredibly kind and always willing to offer anyone a cuddle.

"His inquisitive nature for the outdoors is infectious as each morning he runs to our chicken coop to look for eggs.”

So far, their GoFundMe page has raised more than £9,000.

To donate, go to https://www.gofundme.com/f/battling-sebs-brain-tumour

Emma added: “Thank you for even thinking about donating to Sebastian’s cause.

“We would pay anything and give anything for Sebastian to have a future but we just can’t do this on our own.

“From the bottom of our hearts, thank you.”