Two-year-old Bertie will fly to America for brain tumour treatment

From left, Gemma, Sebastian, Bertie and Claire. Picture by Mandy Charlton Photography
From left, Gemma, Sebastian, Bertie and Claire. Picture by Mandy Charlton Photography
  • ‘He is so young, he doesn’t deserve this’, say parents Gemma and Claire, from Warkworth

A two-year-old boy will fly to America for intensive medical treatment, after enduring a six-hour operation to have a brain tumour removed.

Brave Bertie Miller-Grossett and his loving family will spend Christmas in the States, as he undergoes an unrelenting six-week period of specialised radiotherapy, known as proton beam therapy.

Brave little Bertie. Picture by Mandy Charlton Photography

Brave little Bertie. Picture by Mandy Charlton Photography

The youngster, from Warkworth, will be treated in Florida in an attempt to stop the cancer returning.

During this time, Bertie will have to spend three-and-a-half hours in hospital each day, Monday to Friday, and go under general anaesthetic every time.

His parents, Gemma and Claire Miller-Grossett, are also having to decide on whether to put Bertie on a 16-week trial course of chemotherapy on his return from America.

To support the family, friends have set up an online fund-raising page, which has already raised more than £10,000 in the space of a week.

The couple, who also have 10-month-old Sebastian, are blown away by people’s generosity and kindness, which is helping them through this difficult time.

Gemma, an English teacher at Alnwick’s Duchess’s Community High School, said: “America is going to be a really big deal for Bertie, it will be tough for him.

“We are just devastated for him. He is such an amazing little boy and he is so young – he just doesn’t deserve it.”

Gemma and Claire, who are both 31 and married in York in 2009, admit that their whole world stopped when doctors at Newcastle’s RVI told them that their beloved son had a brain tumour.

Bertie hadn’t been himself for a few months.

He was being sick randomly, was constantly tired and suffering sleep apnea because of swollen tonsils.

He underwent a sleep study and had his tonsils removed in September, but the tot was still unwell.

Just over two weeks ago, Bertie, struggling with sickness and unsteadiness on his feet, saw his GP, who sent him straight to hospital.

It was there that his parents received the devastating news that Bertie had cancer, after a scan showed he had a large, fast-growing brain tumour called an ependymoma.

It came as a massive shock to his parents. Claire, an A&E doctor at the RVI, said: “It was absolutely horrendous. Your whole world just stops. When the doctor said that they had found a mass, I just thought ‘this absolutely isn’t happening’.

“We never thought it would be a brain tumour and you just don’t think this sort of thing can happen to a two year old.”

The situation was so severe that Bertie was rushed into surgery the day after his diagnosis, enduring a lengthy operation to remove the tumour from the back of his brain, as well as undergoing two MRI scans.

Thankfully, the operation went well and the surgeons are hopeful they managed to remove all the visible tumour.

Gemma said: “The operation was awful for Bertie, but he has responded brilliantly and is recovering well.

“It will be a slow process and he is still a little unsteady on his feet, but he is the same Bertie – beautiful, clever, cheeky and observational. He still wants to do things and be active.”

But Bertie’s ordeal is not over. Tomorrow, he will be fitted with a Hickman line, which is a portal for his anaesthetic

And next weekend, he and his family will fly over to America, where the tot will undergo treatment at the Proton Therapy Institute in Jacksonville. His first appointment is scheduled for Tuesday, December 5.

Proton beam therapy – which is not currently available in the UK – uses a high-energy beam of protons, rather than X-rays, to deliver radiotherapy, reducing the risk of damage to surrounding healthy organs

The NHS is covering the cost of Bertie’s treatment, as well as flights and basic accommodation, but Gemma and Claire need to cover their expenses, including travelling with Sebastian.

During his intensive therapy, Bertie will have the weekends to recover, so Gemma and Claire want to treat him on his days off.

Scheduled to stay in America for 10 weeks, the family will be spending Christmas State-side. They will also be abroad for their sons’ birthdays in January.

The couple are also facing the difficult decision of whether to put Bertie through a chemotherapy trial when they return to the UK.

Claire said: “It would be an intensive 16 weeks for him and we don’t know whether it will improve his outcome, so it’s a tough call.”

In a touching gesture, friends of the couple last week set up a JustGiving page to help the family cope during their time in America – and the total currently stands at £10,157.

Gemma said: “We are hoping to use the money to stay in more comfortable accommodation and take Bertie to Disneyland as a treat. We would love to fly grandparents over to America to spend some time with us.

“Bertie is really excited about Christmas and we want to make it special for him.”

The couple admit that they are overwhelmed by people’s donations to the cause.

Claire said: “The support – both emotional and financial – has been phenomenal. People can’t do enough for us and we are so grateful. It means that we can give Bertie what he needs.

“We also want to use the money to help those who have supported us, such as the charity CLIC Sargent and Crawford House, in Newcastle.

“We want to do what we can to raise awareness of these charities and childhood cancer. The RVI has also been fantastic.”