Mum reveals last hug with son, 5, after he dies from same rare brain cancer that killed his dad and 9-year-old brother
A MUM has described the last hug she shared with her five-year-old son as he died from the same rare brain cancer that killed his dad and his nine-year-old brother.
Marie Hughes told of the “crushing wave of grief” as she held her son Milo in her arms for the last time.
The mum has endured the loss of half her family to a rare condition which causes brain tumours, losing her son Oscar in 2014, and her husband Ian who died last January aged 49.
Speaking of the heartbreaking moment when her son Milo passed away last month, Marie told The Mirror: “I don’t think anyone else can carry my pain but I don’t want anyone to forget that my children lived.”
Milo took his last breaths in the loving arms of his brothers Seb, 18, and Lucas, 11, and his mum as the family played his favourite song, Shotgun by George Ezra.
With tears in her eyes, Marie recalled: “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.”
The mum said her youngest would not give in to the illness, and that she will always treasure their time together.
She remembered: “He’d say, ‘I love you more than the flowers are beautiful and more than the sun is shining’. He was incredibly loving.”
Milo’s death was the third tragic loss in Marie’s family, after the death of her son Oscar, who died a year after his first tumour was found, aged just 9.
When Marie and her husband Ian began their family, neither knew that Ian had a rare condition called Li-Fraumeni syndrome, which makes people more vulnerable to particular cancers.
Sometimes, the condition can be passed on to children.
In 2013, the young family were struck by tragedy as their sporty son Oscar, then eight, became unsteady when walking and experienced nausea.
Oscar was soon diagnosed with a medulloblastoma tumour, but after responding well to surgery and chemotherapy, the tumours spread to the eight-year-old’s brain and spine.
Marie said: “We didn’t lose hope until the very end. We thought, ‘Something is going to come up, something magical is going to happen’.
“At the very end, it was just Ian and me. I sang him a Danish lullaby I used to sing to him when he was little, and he liked that. We talked to him.”
Then, in 2020, just weeks before her youngest son Milo was diagnosed with the same condition, Marie’s husband Ian also passed away from a brain tumour, aged just 49.
With Marie and Seb by his side, the young family listened to Elbow’s One Day Like This, a track he had chosen for his funeral.
Brain Tumours: How do they differ?
The brain is made of different tissues and cells which can develop into different types of tumours.
There are over 130 different types of brain tumours.
Glioblastoma multiforme is the most common and most malignant primary brain tumour.
Glioblastoma multiforme usually spreads quickly to other parts of the brain.
For this reason, these tumours are difficult to treat.
It is not uncommon for them to recur after initial treatment.
Medulloblastoma is the second most common brain tumour in children.
But it is the most common malignant (high grade) children’s brain tumour.
Around 55 children are diagnosed with medulloblastoma each year in the UK, according to Cancer Research.
Medulloblastoma is most commonly diagnosed in children between three and four and between eight and 10 years old.
It’s slightly more common in boys than girls.
Marie said: “It was our song. We both loved it so much. He had the best death we could give him.”
Despite the harrowing loss of her family, Marie has dedicated her life to raising money for research into brain tumours in children.
Setting up a charity with her husband Ian before his death, Marie hopes the charity will prevent other parents from experiencing the same unimaginable pain she has gone through.
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.”
Oscar’s Paediatric Brain Tumour Charity is already funding a clinical trial to see if children with certain tumours can be treated with less toxic chemotherapy and lower levels of radiotherapy.
Despite her loss, Marie continues to look forward, saying her sons Lucas and Seb give her the strength to face the future.
She said: “Lucas, Seb and I can still make great memories.
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“I don’t know what I would do if I didn’t have the boys.
“They’re still here and they deserve to have a good life. That’s why I set up the charity.
“I can’t change what has happened but I can at least try to do my best for them.”
To donate to Oscar’s charity, visit oscarspbtc.org