In Hope Stories
Just 1% of the national research spend has been allocated to this devastating disease
Young Jasmine from Bracknell, Berkshire, was diagnosed with a midline glioma (also known as DIPG) in February 2023. The seven-year-old began to complain of double vision and headaches in January so doting parents, Anthony and Jakki, took their only daughter to the GP. A precautionary MRI scan revealed the shocking discovery of an inoperable and cancerous mass on Jasmine’s brain. She is currently undergoing gruelling radiotherapy treatment. As the family come to terms with Jasmine’s life-limiting prognosis, they are raising awareness and funds in a hope to find a trial which can prolong their daughter’s life.
Here is Jasmine’s story, as told by her parents, Anthony and Jakki…
Our baby girl, Jasmine, is seven years old. On the day she was born, our lives changed for the better, forever, and she has been our brightest light ever since. Although Jakki and I are separated, we are both very much present in our daughter’s life.
With her dark shiny hair, twinkling brown eyes and cheeky, gap-toothed smile we have always been filled with pride and humbled by the comments everyone makes after meeting her. Jasmine is kind and caring, gentle and generous, quick-witted and so very special that she touches even the hardest of hearts. She is lively and active and loves playing with her friends, dancing to her favourite songs and exploring all the things that seven-year-old girls like to do.
“At the beginning of February, our lives were turned upside down when Jasmine was diagnosed with brain cancer.”
She started to complain of headaches and double vision. As this continued, she became more and more upset by the change in her vision. A visit to the optician was our first port of call which found nothing wrong. We took Jasmine to the GP who said there was nothing visibly wrong but to ‘be on the safe side’ they would send her for an MRI at Wexham Park Hospital in Slough.
That evening, on 1 February, whilst out walking the dog, Jakki received a call from the consultant. She said: “They told me that Jasmine had a brain tumour and we needed to wait for a phone call the next morning. I was numb and totally in shock. I froze and couldn’t understand what was going on. In a way I’m glad I wasn’t with Jasmine when I had the call because I didn’t want her to see me so upset. The news threw me and on the way home I got lost, I was disorientated. When I got back I had to tell Anthony what I had been told over the phone and our world collapsed.”
The next morning we called the consultant to understand what would happen next. They told us the tumour was inoperable as the location of it posed more risk to life-changing injuries and even death. We were told radiotherapy was the only treatment and that could only slow the growth of the mass and hope to give Jasmine her vision back by taking pressure off the optic nerve.
The consultant stressed that children with this tumour don’t live past 12 to 18 months.
“The prognosis made us feel sick. We sat in the consultant’s office and wept desperate tears at the thought of losing our Jasmine and we haven’t stopped crying since.”
How can you not be able to cure this type of cancer? We’ve seen advances in treatment and cures for other diseases, how is it possible that there is nothing that can save our little girl?
A biopsy confirmed Jasmine had a midline glioma (also known as DIPG), for which the prognosis is poor.
I did my own research of treatment available outside the NHS, privately within the UK and overseas. There is currently no trial in the UK suitable for Jasmine. As parents, we feel as though there hasn’t been enough money put behind finding a cure and better treatment for this disease.
It’s almost as if bureaucracy is ruling investment into the disease. People aren’t surviving so companies aren’t getting the return on money they invest. All the trials I have found are self-funded by the patient and their family, sometimes at a cost of hundreds of thousands of pounds. When we look at technological advances across the medical field, brain tumours seem to have fallen drastically far behind.
Recommendations made in the recent Inquiry Report Pathway to a Cure – Breaking Down the Barriers are a step in the right direction. The report was launched at Westminster on 28 February, but if we’d had this ten years ago, we may not be faced with the horrific thought of losing our only daughter. To hear that £40 million of investment was promised in 2018, but only £15 million has been allocated is outrageous. The research that money would have funded over the past five years might have helped Jasmine, even saved her life, but now we’ll never know.
Currently, the plan is for Jasmine to have radiotherapy fives times a week for a gruelling six weeks. After that she will be made as comfortable as possible.
We haven’t told Jasmine her prognosis, but she knows she’s very poorly and has a lump in her head. She had her first radiotherapy session on 28 February and was an absolute warrior, she’s so brave and positive. In a video we recorded of Jasmine after her first radiotherapy session, she said: “I just came back from my treatment, and it was really cool and it reminded me of a toilet, but like an upside-down toilet. You just have a lay on the bed with a mask on, just like when you’re in a spa you have the green face mask and cucumbers over your eyes, But it’s mostly above your face. I really enjoyed it. If you ever do all of these things that I have gone through, it’s easier than you think.”
We’re incredibly proud of Jasmine and everything she has overcome. She used to be frightened of many things. She was scared of having her blood pressure taken, but now she’s laying on a table with a mask covering her whole face. She has taken
everything in her stride, and we nicknamed her Jasmine the Warrior Princess. But she shouldn’t have to deal with this. No-one should.
Whilst there are no clinical trials or treatments in the UK for this kind of tumour at this time and the prognosis is extremely poor, there are a small number of clinical trials abroad. Due to criteria, these trials are not currently ready to take Jasmine on, we hope and pray this will change in the coming weeks and months. When this does we will need to fund her place privately, which is expensive.
This is our only hope to ensure that our beautiful girl has a chance to continue her promising life. We have set up social media accounts to follow Jasmine’s journey alongside a go fund me page, raising money to make this possibility a reality. We’ll do anything we can if it gives us a little longer with our baby girl. So far we’ve raised more than £120,000.
Four weeks ago Jasmine was a normal child. Everything feels surreal and we still feel as if we are going to wake up from a nightmare.
Whilst we are living with anguish, sadness, anger and pain, it’s important for us to share our story to raise awareness of this cruel disease. As Brain Tumour Awareness month begins, we hope to continue to conversation of brain tumours to help make a difference for future generations. It may be too late for our little warrior but we want to make sure her battle isn’t in vain.
Brain tumours are indiscriminate; they can affect anyone at any age. What’s more, they kill more children and adults under the age of 40 than any other cancer... yet just 1% of the national spend on cancer research has been allocated to this devastating disease.
Brain Tumour Research is determined to change this.
Together we will find a cure.