Sudden brain tumour diagnosis: Support for Ronnie (Age 11)

I am raising money for Ronnie, my cousin’s 11-year-old son and his family to provide comfort and support in the most difficult circumstances that a family can ever find themselves in.

In the first months of this year, a shocking and disturbing timeline has unfolded for Ronnie. Following an MRI at the end of February, Ronnie’s parents were informed that he had a tumour growing on his spine and brain. On 5 March 2024, Ronnie underwent major surgery at Addenbrookes hospital in Cambridge to have the tumour removed. Two weeks later, Ronnie’s parents were delivered the most devastating news - the biopsy revealed a cancerous, incurable tumour called Glioblastoma Multiforme, Grade 4 H3K27 mutation. This is a highly rare, aggressive tumour called a Diffuse Midline Glimoa that is particularly resistant to conventional treatment. Due to the position and depth of the tumour, the doctors concluded that they were unable to remove all of it. A substantial part of the tumour is growing in Ronnie’s brain stem, which is also extremely rare in children.

On 18 April 2024, Ronnie completed his first radiotherapy course. The course was administered with the purpose of attempting to slow tumour growth and is a necessary step that must be taken before any treatments can be administered.

The treatment options for this tumour type are very limited and any treatments will be with the purpose of prolonging Ronnie’s life. Chemotherapy would have no effect even by injecting it directly into the tumour. Last month (June 2024), we were informed that the radiotherapy has reduced the tumour. Whilst there has only been a small reduction, this is extremely good news. Frustratingly though, Ronnie’s oncologist is at this stage unable to prescribe him a drug called ONC201 which has only recently become available through the NHS on compassionate grounds. Whilst still in its Phase II trials in the US, ONC201 has shown very promising results in fighting the exact mutation that Ronnie has.

Whilst all of this is unfolding, each day Ronnie is becoming more and more physically and visibly uncomfortable. Ronnie has been on a high dosage of steroids to reduce the swelling around the brain tumour and to improve the symptoms. Even a mild reduction in the steroid dosage affects Ronnie’s ability to use one of his arms and ability to walk.

Unfortunately, one of the major side effects of the steroids is that Ronnie’s face and tummy have blown up. At an age where he starting to become particularly conscious of his looks, he is finding these side effects particularly distressing and is increasingly not wanting to see friends or leave the house. The steroids have also increased his appetite, affected his ability to sleep and is understandably making him feel quite irritable.

All of this has happened at a time where Ronnie’s life is just getting started. Ronnie has always been a big character and very popular at school. He is a confident boy who expresses himself well beyond his years making everyone around him laugh in the best way! Ronnie has four older sisters who are deeply distressed to witness Ronnie unexpectedly change so much during the first half of this year.

Additionally, Ronnie’s 16-year-old sister is in the process of completing her GCSE’s. Ronnie now requires around the clock care and there is an extremely gruelling and grim time ahead.

A number of upcoming decisions need to be made in respect of Ronnie’s treatment options and we are in the process of arranging a consultation with a leading US based pediatric neuro-oncologist with a specialism in brain tumours. At the same time as wanting to ensure that Ronnie can access any potential medical treatments with ease, we want to also try to make sure Ronnie is as comfortable as possible and to buffer his household so that they are able to maximise the quality time they spend with Ronnie. It is near on impossible to continue like normal when trying to deal with and process something as devastating as this.

Vicky (Ronnie’s mum) and Nick (Ronnie’s dad) are providing round the clock care for Ronnie to assist him through the night when he is uncomfortable. Ronnie wakes up particularly early due to the muscle spasms he is experiencing in his neck. The family rely solely on Nick’s income to support them who is trying his best to maintain the financial status quo. In the circumstances, this is tremendously hard.

I will end this note by asking you to please donate to this fundraiser to help Ronnie’s family with plans for his care, making the upcoming time ahead as comfortable as possible for Ronnie and time off work for Ronnie’s dad. The aim is to try and ease the financial impact and ensure that the family are able to enjoy as much time with Ronnie as possible. Please share this fundraiser far and wide. All funds raised will go directly to Ronnie’s family to pay for his care, and expenses in this difficult time. Gofundme only asks for a "tip" when you donate - they do not take any of the money. Feel free to skip this "tip".

Thank you in advance for supporting our fight to show Ronnie as much love and care as possible.