A family in Sudbury say they're doing everything to try and help their son with an incredibly rare tumour
11-year-old Ronnie Hood was diagnosed in March and was given less than a year to live.
Last updated 26th Aug 2024
A family in Sudbury have said they're going through the most horrific thing they've ever had to go through.
It's as their 11-year-old son Ronnie Hood was diagnosed with an incredibly rare tumour, diffuse midline glioma, on his brain stem back in March.
Ronnie had started complaining that his neck was hurting and then that he had numbness in his hands.
His parents, Nick and Vicky Hood thought this was because he was gaming too much, but decided to take him to the doctor, when the doctor couldn't see anything they referred him to physiotherapy.
The physio then referred them to paediatrics with concern over the numbness Ronnie had in his fingers.
Unfortunately, this appointment got lost so Dad Nick went back and reminded them about the appointment, securing one for February (2024).
The doctor sent Ronnie for an urgent MRI at West Suffolk Hospital and then two weeks later, it was confirmed Ronnie had a tumour on his brain stem and they needed to operate.
Because it's such a rare tumour, staff at the hospital had never seen it before. His mum told us "Ronnie is only one of a handful of people in the world who's got it."
Vicky explained what it was like to hear the diagnosis.
"It was the most horrific thing, Nick couldn't speak as he was in shock and she broke down.
"I couldn't believe what was happening, I had never felt so devastated in my life.
"Then I felt guilty because it took a year for him to be diagnosed and wondered if I could have done anything else, but then when I asked they saidno, it wouldn't have made a difference what so ever"
They told us that it all happened so quickly and it wasn't even a week later that Ronnie was having the operation, unfortunately, doctors were unable to remove the entirety of a tumour growing on his spine and brain.
Vicky told us this was a terrifying moment for the family.
"He Ronnie was going I don't want to die, I don't want to die, this was when he was being put under.
"He was thinking he was going to die.
"When we came back, he saw the sign for Sudbury and he sobbed his heart out he said I didn't think I was going to see that sign again, it was awful. He didn't half cry because he didn't think he was coming home."
Since the treatments Vicky has been taking care of Ronnie.
"Ronnies has gone from playing on his bike, always out with his friends, doing lego, he loves arts and crafts to now - he's got an electric bed, he can walk, but his left arm he can barely use. He can use his hands, but otherwise, he can't do anything else."
Vicky gets him dressed, cleans him and and sorts out his medication.
"It's heartbreaking and it really is because we're watching our little boy, who was outgoing... deteriorate and it's the most horrific thing I've ever had to go through. "
We asked how they've been coping, having to be strong for Ronnie whilst dealing with it themselves.
Nick told us "It's not difficult to be strong for him."
"I wouldn't want him to see us upset, that's the very least he can expect of certainly his Dad, so I try and just have a laugh together, but you try not to think about it."
After the operation, chemotherapy and radiotherapy they wanted to try an experimental drug called ONC201.
It is used to treat brain tumours in young adults but told they were ineligible as the tumour had shrunk.
Nick explained it as a doubled edge sword.
"If the tumour actually reduces in size, which of course is great, but then that makes you ineligible for the ONC201, so basically it has to be growing, you have to be in real dire straights before you're going to get it."
Extended family members have set up a fundraising campaign in an effort to raise ÂŁ50,000 to help fund the purchase of ONC201 and other treatments privately.
They said they'll do anything and everything to help their little boy.
They have currently raised ÂŁ43,000, which has allowed them to buy the ON201
"It's paid for and we're waiting for it to be delivered but it's coming from Germany and it has to go through customs and everything"
They're hoping in a few month's time they will be eligible to receive the drug through the NHS<