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Ewing Sarcoma – Mahesh’s story

Mahesh, from Bolton, was first diagnosed with Ewing Sarcoma when he was eight years old, in May 1998. His mum had become alarmed at a growth which appeared on his left thigh. The growth quickly engulfed his thigh. A family friend (also a GP) advised that the tumour should be removed. Only after it was removed and tested, did the family discover it was a malignant tumour. After two surgeries on his leg, Mahesh underwent 12 months of intensive chemotherapy, that also required him to miss nearly 14 months of school.

He then went into remission for almost 14 years. However, after a freak accident at the gym, Mahesh was again diagnosed with Ewing Sarcoma at the age of 21. His second round of treatment involved the removal of his left collarbone, eight months of chemotherapy, radiotherapy and high-dose chemotherapy.

Now, aged 31, Mahesh recalls some of what he went through and his anger at the lack of treatment progress and funding for children’s cancer research.

Mahesh says, “Both times, as a child and then as a young adult, my cancer was found by chance. The second time round, I’d just finished my law degree at university and returned home to apply for jobs as a trainee solicitor. I’d been to the gym and grazed my collarbone with a handheld weight. Almost instantaneously, an egg-shaped lump appeared on my collarbone, which just didn’t look right.

Ewing Sarcoma
Mahesh after treatment

“Panicked, I went to A&E thinking I’d broken something. I was advised that it was likely to be a “chipped bone” with some swelling. They referred me to the fracture clinic for some further tests a couple of days later. After two CT scans, a MRI scan and a bone biopsy, I was diagnosed once again with Ewing Sarcoma. In the space of four weeks, my life came crashing down again.

“I recall little from my illness as a young child. I have probably subconsciously blocked it out. Over time, and during the course of my check-ups, I was told about the long-term side effects of the chemo given to me, such as kidney damage, a weakened heart and infertility. I’ve had annual scans and appointments every 18 months since I was eight. I’m institutionalised!

Ewing Sarcoma
Mahesh, aged 8, during his first treatment for Ewing Sarcoma (pictured with Sir Alex Ferguson)

“I think what’s shocked and angered me the most second time round, is how little progress there has been in the last 14 years. The same treatment options were presented to me as when I was a boy. The biopsies were the same, the chemo, the surgery, the side effects, everything. As a patient, I could see little advancement. And yet, I read all the time about the great strides being made in treatments for other cancers, like prostate cancer treatment or lung cancer, for example.

“It’s an incredibly sad fact that it takes a child dying for money to be raised for research into the illness that caused their death. And often, it’s the families of those children who are doing most of the fundraising work. Each family has the same goal; not wanting another family to experience their tragedy. Surely there is much to learn from the way children develop and react to cancer and treatment that would translate to adult forms of the disease?

“Although I’m fortunate enough to be looking ahead now, I have to live with the long-term effects of my treatment. I’ve seen too many others like me die from this disease – young people with aspiration, talent and lives to live – and that has to change.”

Nancy Dykes

Nancy Dykes

Nancy, 11, was diagnosed with rhabdomyosarcoma when she was just 2 years old. She was treated with Proton Beam Therapy (PBT) in Germany but unfortunately relapsed less than a year later. The family were then sent to Germany for a second round of PBT. Although treatment helped to cure Nancy’s cancer, she has been left with lots of lasting effects which will require ongoing treatment throughout her life. Here Nancy and her mum, Antonia, share their story in the hope it will help others, raise awareness, and raise more money for children’s cancer research.

Prof John Hickman

Prof John Hickman

Why I am a Trustee of CCRF
 
I am a relative of the Larkin family and knew Rosie Larkin ( Friends of Rosie, now CCRF) when she had and then died of neuroblastoma, aged six. At that time, I was a scientist and professor at Manchester University, actively working on the problem of why some cancers do not die despite intensive and toxic therapies.  Seeing Rosie during her unsuccessful therapy and then attending her funeral, besides being emotional, drove me to double down on my own research as well as to support the Charity as best I could as a cancer researcher. I spent over a decade as the Chairman of the Scientific Advisory Board of the CCRF, when the Board moulded policies to ensure that funds raised for research into childhood cancers were distributed only to clinicians and researchers who had the brightest ideas that could impact of cancer medicine for children.
 
My role on the Board
 
As a Trustee,  I hope that my many decades of experience in cancer research and medicine can help the CCRF determine where best the funds that are raised can be invested in cutting edge research and medicine. I am also keen that the CCRF brings together UK and international experts in science and cancer medicine to brainstorm on how best to advance the treatment of childhood cancers.
 
My Background
 
I was a Professor of Pharmacology at Manchester University, working on drug resistance in cancer. I then moved to Paris, where I still live, to head cancer drug discovery at a French pharmaceutical company (Servier). I then headed an EU consortium for six years that brought together researchers from the pharmaceutical industry, universities and biotechnology companies, from all over Europe and the UK, to improve cancer drug discovery. I continue to be active in cancer health policy, publishing in the medical literature.
Katrina

Katrina London

Why I am a Trustee of CCRF

I have spent my professional career representing individuals and families affected by the devastating asbestos-related cancer, mesothelioma, which has no cure and for which there are only a limited number of palliative treatments available on the NHS.

I joined CCRF because I wanted to bring my understanding of the need to raise awareness of less well known cancers and passion for the need to secure improved funding for research to children facing a cancer diagnosis.

My role on the Board

I am responsible for oversight of our collaboration agreements with other charities to co-fund research into cures and treatments for childhood cancers. I also manage our challenge events and help with community fundraising. 

My Background

I am a Senior Associate at Irwin Mitchell LLP and specialise in Asbestos Disease Litigation, acting on behalf of victims of asbestos related diseases and their families.  Over the years, I have undertaken a number of fundraising challenges to raise money for cancer research, including a 1000 mile cycle ride from Glasgow to Southampton.   

Carla

Carla Nuttall

Why I’m a Trustee of CCRF
 
I became a trustee of the Children’s Cancer Research Fund because I believe every child deserves the chance to grow up healthy and with everything to look forward to in life. Like many people, I’ve seen the impact cancer can have on families and I wanted to do something that could make a real difference. This started through my work as an ambassador for Cyclists Fighting Cancer, which supported young people and their families in finding strength, confidence, and joy through movement.
 
That experience shaped my understanding of the challenges families face and the importance of community-led support – but crucially, the clear need for that to go hand-in-hand with targeted research and long-term solutions.
 
This is why I’m so passionate about the work CCRF does and proud to contribute to a cause that gives children and their families, the greatest chance of living a life without limits.
 
My Role on the Board
 
I support CCRF’s mission by bringing my experience in brand, marketing, and communications to the board. My focus is on helping CCRF tell its story in a way that resonates with people – whether that’s families, researchers, donors, or the wider public. I work alongside an incredible team to strengthen CCRF’s voice, build trust, and grow awareness so that more children and families can benefit from the breakthroughs we’re helping to fund.
 
My Background
 
I’m the Executive Director of Corporate Affairs and Marketing for The Growth Company, a social enterprise dedicated to helping people, businesses, and places to thrive through its market-leading insight, employment, skills and business support.
My passion is to help the organisations I work with to communicate with clarity, purpose, and integrity. That’s why I’ve spent my career in strategic communications supporting organisations that want to make a positive difference – CCRF could not fit my sense of purpose any better.