Please help Leon in his fight against cancer

Hi, I am Veronika and I write on behalf of a regular boy going to school in London and enjoying too much Fortnite.

Sometimes it's the journey that teaches you a lot about your destination, but you wish to have found out in an easier way. Last October, our 9-year-old son Leon was diagnosed with a malign brain tumour (Ependymoma) – a rare kind of brain tumour. It is difficult to understand why such a young life would be impacted. One minute he is at school, and 24 hours later, he is in the operating theatre. How can a boy who was laughing suddenly awake with tubes everywhere?

The silver lining is that he was looked after by a fantastic and very empathetic surgeon at Great Ormond Street Hospital, who went out of his way to operate on Leon just coming out from another surgery. While we could not even say the word cancer, the boy's bravery helped us face his diagnosis head-on. He took charge of his health by adjusting his diet, which even meant forgoing a slice of his birthday cake. He added many vegetables to his meals, including those he had never eaten before, and even if his taste buds had to get used to it.

Only 30 children in the UK are impacted by this type of tumour, and knowledge and treatment options are scarce. The clinical trial he is participating in merely compares chemotherapy and radiotherapy, with results taking years to complete.

Time is not on the side of those battling cancer. While the initial line of care, radiotherapy, has shown success, we must now confront the lingering tumour stem cells that continue to circulate in the body (and cannot be addressed by chemo or radiotherapy). These cells are often the reason for metastasis and recurrence, which can occur around ten months after surgery. This situation extends beyond standard NHS care and is not covered by insurance. With brain tumours being particularly aggressive, the greatest risk lies in doing nothing at all.

Our goal is to take every possible measure as early as we can. The next step involves treatment at the Ovital Institute under the guidance of a dedicated professional who has personally triumphed over cancer himself. The aim is to eliminate the pathogens that have compromised his immune system and to enhance recovery through targeted therapies.

One treatment we like to advocate for anyone who is impacted by cancer is metabolic therapy treatment. Science is supporting how effective it is to target the fuel to the cancer cells. The information is out there for scientist and clinicians, but often to difficult to comprehend to the patient and oncologist have to spend considerable time they don’t have. In addition each patient has its own metabolic pathway which makes using the same strategy challenging.

The individualised approach make these treatment not easily accessible or as costs go quickly in tens of thousands.

Our goal is to throw in every effort as early as possible.

Every donation and show of support makes a real difference. I have seen these Go Fund me pages circulating over the past year and proudly made some contributions especially when it comes to children and primary caregivers with small children. We really hope that Leon will defy all odds and that I can share his journey with a larger community so that the impact is made on other children battling this disease.

Your contribution can make a significant difference in their lives and help pave the way for better outcomes in the future. Thank you.

Leon on the day he finished radiotherapy exactly on his 9th birthday.