A young boy with a ‘Mickey Mouse-shaped’ tumour who was left fighting for survival has been given a second chance thanks to a drug made up especially for him.
Ronnie Kerman, five, from Hull, became one of Britain’s youngest stroke patients at 19 months and went blind due to a disease that causes blood vessels in the brain to narrow.
Doctors also discovered a tumour in the MRI scan following his stroke, that posed a danger to Ronnie’s life, leaving dad Phil, 43, and mum Louise, 41, devastated.
The non-cancerous tumour was surrounded by two cysts, causing doctors to name it ‘Mickey Mouse’ as it resembled the shape of the Disney character.
In a bid to shrink the tumour Ronnie was given chemotherapy, but after three different chemotherapy drugs failed to reduce the tumour long-term, his doctors started discussing end of life care.
His desperate parents begged them to try something else and they decided to give him a special type of oral chemotherapy.
Ronnie is believed to be one of the youngest patients in the UK to have the drug and it had to be made up especially for him so it can be administered through a feeding tube in his stomach.
Thankfully, the drug is working and the tumour continues to shrink.
“It’s amazing to see how much Ronnie has changed over the years of ups and downs,” Phil told Jam Press.
“As soon we got told of the new chemotherapy, we couldn’t thank them enough for giving him a chance.”
Before Ronnie was rushed to hospital, his parents noticed some symptoms but thought it was nothing to worry about.
Phil said: “I started to see coffee-coloured marks on his body so I took him to the hospital on the outskirts of Hull in Beverly in early 2017.
“The doctor said it was fine.
“In December 2017, I took him to the doctors about his eyesight, because he was crawling around and standing up but feeling things around him. The doctors said we’ll make you an emergency appointment.
“We waited nine weeks because it was a self-referral.
“Within these nine weeks, he had his stroke. We didn’t realise at the time that there was a tumour pressing on his brain.”
On 2 February 2018, Louise, 41, went to get Ronnie and twin brother Robert out of bed but noticed Ronnie was a little out of sorts.
Phil, who is also dad to Emily, eight, said: “He was just lying down. He normally stood in his cot waiting to be picked up and changed. He couldn’t move.”
Louise shouted for her husband saying something was wrong.
Phil said: “I rushed into his room, and my first thought was to lift his left arm up. Once I did that I knew it was a stroke because it just went floppy.
“We rang an ambulance, and the paramedics came.”
Baby Ronnie was rushed to Hull Royal Infirmary where an emergency MRI was carried out.
The outcome of the scan was far worse than what the couple anticipated.
Phil said: “The doctors said they had found a dark mass on his brain – the tumour – and rushed him to Leeds General Infirmary.”
A stroke was confirmed and the family were told he has moyamoya disease, a chronic and progressive condition of the arteries in the brain.
Ronnie was rushed into surgery but after a 12-hour operation, doctors could only remove a bit of the mass as it was too far into his brain.
During an eight week stay in the hospital Ronnie was also diagnosed with neurofibromatosis type 1, a hereditary condition passed down from Phil, and optic pathway glioma which resulted in him becoming completely blind.
Phil said: “We didn’t know what was going to happen next.
“He had shunts put into his head to drain the cysts and these tubes went into his belly.”
Doctors also put baby Ronnie on weekly chemotherapy to tackle the tumour – however, the first batch didn’t work and the tumour continued to grow.
Ronnie was then put onto different chemotherapy which worked for a short amount of time, before they realised it was causing problems in November 2019.
Phil said: “The tumour started to shrink but then he developed an allergy to this type of chemotherapy and broke out in red rashes all over his body.
“When the doctors told us that he was reacting badly to the treatment it was devastating to hear. We didn’t know what to expect. It was a nightmare.”
Ronnie was put on the third type of chemotherapy, which he had to have fortnightly in Leeds, a 62-mile drive from the family home.
Thankfully, it helped the tumour shrink but in February 2020, they were given the news that it was growing again.
Ronnie’s family were put into an impossible situation when doctors began to talk about end-of-life care.
Phil said: “I couldn’t believe what I was hearing, especially for a little boy. You don’t want to hear these words for your own child.
“I just pleaded with the doctors and said you got to do something. You’ve got to save his life for us.
“That’s when they came up with this new drug Trametinib, a daily chemotherapy treatment that can be taken orally. He’s been on it for a year and a half now.
“The drug was never mentioned before palliative care was considered.”
Ronnie is believed to be the youngest patient in the UK to have been administered the treatment and they tailor it for his needs.
Phil said: “They make the medicine especially for Ronnie so that we can feed to him through a tube in his stomach.
“The tumour has continued to shrink throughout the new round of treatment.”
Ronnie was first given the medication September 2020, and he has been on it ever since.
Last week, the family were told that the tumour had shrunk again slightly, indicating Ronnie is on his road to recovery.
Phil continued: “He is quite independent; he knows what he wants and when he wants it.
“He’s started bum shuffling and he’ll be in the living room and find his way into the kitchen and go straight for the crisp cupboard.
“He knows exactly where he is even though he’s blind.”
To help Ronnie lead a better quality of life, a Life for a Kid volunteer and friend of the Kerman family, David Freer is fundraising £2,500 for any additional sensory equipment that Ronnie will need.
Contributions to David’s fundraiser for Ronnie can be made on his JustGiving page.
