MUM WHO LOST
AS five-year-old Milo Hughes took his final breaths in the arms of his family, mum Marie felt a familiar, crushing wave of grief wash over her.
She had felt that same sense of desolation when another son – Oscar, nine – died in 2014 and when her husband Ian passed away in January last year.
Marie has been through the unimaginable, losing half of her family to brain tumours caused by a rare condition.
Yet despite her agony, she has raised more than £500,000 for research into childhood brain tumours through a charity set up with Ian before his death.
Today Marie tells how she copes and describes the heart-rending moment Milo died last month – cuddling brothers Seb, 18, and 11-year-old Lucas as they played his favourite song, Shotgun by George Ezra.
TREASURE
Through tears, Marie said: “I don’t think anyone else can carry my pain but I don’t want anyone to forget that my children lived. As Milo was dying, we played Shotgun. It sounds wild, but he loved that song.
“All three of us were with him. I lay on his left side, Seb was on his right side and Lucas along the bottom. We made sure he could hold our hands, although he wasn’t moving at this point.”
Marie said Milo refused to give in to his tumour and they shared tender moments she will always treasure.
She added: “There were points when you’d think, ‘It would just be kinder if it happened now’. Then I’d say something and I’d be like, ‘Don’t let this ever stop’.
“He’d say, ‘I love you more than the flowers are beautiful and more than the sun is shining’. He was incredibly loving.”
Milo never got the chance to meet Oscar, who died a year after his first tumour was discovered. And just weeks before Milo was diagnosed, the boys’ dad Ian died in a hospice aged 49.
When they started their family, Marie and Ian had no idea he had rare Li-Fraumeni syndrome, which makes sufferers more likely to develop certain cancers.
In some cases, the disease can be passed on to children.
Despite her heartbreak, Marie, from York, has given up her admin job to devote herself to running the brain tumour charity she and Ian founded in Oscar’s name.
Oscar’s Paediatric Brain Tumour Charity has already helped fund a clinical trial which aims to find out if children with certain tumours can receive less toxic chemotherapy and lower doses of radiotherapy without cutting survival chances.
Marie said: “I think this is my life’s work now and it would be hard to give it up. I can’t live with the frustration that we’re not further with research.
“We need better and kinder treatment. When we set up the charity, I said I didn’t want other parents to go through what I went through with Oscar.
“It’s so painful to think that six years later, I was there again myself. I’m not going through it again, I hope, but I can’t
let someone else go through it.” Marie’s happy family was plunged into turmoil in February 2013 when sports fanatic Oscar, then eight, became unsteady on his feet and nauseous.
He was diagnosed with a medulloblastoma tumour, but had surgery and initially seemed to respond well to chemotherapy.
Marie admitted: “It was horrific to hear those words, but we didn’t think it was a death sentence.”
As his treatment neared an end, they planned a party to celebrate. Yet there was devastating news in store.
Scans showed Oscar’s brain and spine were coated with tumours.
Marie said: “We got taken into a side room – a clear sign something is wrong. The doctors said, ‘He’s got leptomeningeal spread’.
“I’d read up and when they said those words, I thought, ‘This is it now’. Then, you pick yourself up and you go, ‘Right,