Team fundraiser • 6 members • The Brain Tumour Charity
In February 2024, Martin and his courageous friends are embarking on an extraordinary journey in the Swiss Alps, taking on a challenge that's as daunting as it is inspiring. Over four intense days, they will ascend a staggering 8,848 meters on skis (the height of Mount Everest), facing conditions akin to tackling three consecutive marathons. This incredible feat is known as the Everest in the Alps challenge.
However, this mission transcends conquering a mountain; it's about defeating a formidable adversary - pediatric brain cancer. Martin and his team have embraced this grueling challenge with a profound purpose - one that resonates deeply with our family.
In October 2021, our son, Alex, received a life-shattering diagnosis after a year of enduring relentless migraines, vomiting, papilledema, seizures, and ultimately the loss of sight in his right eye. A brain biopsy in July 2021, led to a diagnosis of hydrocephalus and the installation of a VP shunt in his brain. Yet, the relentless mystery persisted, casting a dark shadow of uncertainty over our lives. It wasn't until a fateful spinal biopsy in September 2021 that the unimaginable truth emerged – DLGNT, an uncommon and devasting form of brain cancer.
Alex's diagnosis was so rare that even his oncologist had never encountered it before. We embarked on a global quest for answers, reaching out to professors, doctors, and researchers worldwide. However, before treatment could begin, we faced a significant hurdle - a lack of sufficient tissue from the spinal biopsy for necessary analysis, and additional spinal biopsies were deemed too dangerous.
In November 2021, as cancer spread rapidly, Alex underwent a crucial third brain biopsy with expert consensus from institutions like Toronto Sick Kids, Heidelberg, and Great Ormond Street Hospital, all supporting the use of Trametinib, a targeted chemotherapy drug with anti-cancer properties. Starting Trametinib in December 2021, Alex experienced notable progress, witnessing tumor regression in the brain and spine, although manageable skin issues emerged. By the summer of 2022, seizures emerged, requiring nearly a year of medication trials for control.
In early spring of 2023, recognizing tumor progression in MRI scans, we sought an alternative —Tovorafenib, a trial drug available only in the USA or Barcelona. Despite our efforts, regulatory hurdles in Barcelona worsened Alex's condition. Returning to the UK, we resumed Trametinib and steroids to ease some symptoms, but as tumors neared his brain stem, Alex faced the loss of short-term memory. A glimmer of hope emerged through a Toronto clinical trial, yet Alex's health precluded travel. After an unwavering eight-week campaign, we secured compassionate use of Tovorafenib in the UK, resulting in significant tumor reduction within six weeks and the restoration of Alex's short-term memory.
At the time of Alex's diagnosis, we felt lost and alone, spurring us to advocate for brain cancer research. We built an international community of over 40 DLGNT patients and their families through our website and Facebook page, believing that together, we can offer comfort and hope to others facing similar battles. But we quickly recognized we needed more help.
You may wonder, "Why is this challenge so crucial?" The answer lies in its profound impact on our children like Alex and their families. Imagine if it were your child or loved one facing this daunting diagnosis. Our mission is clear - to raise funds for groundbreaking research into brain tumors, particularly DLGNT, where research is scarce. All proceeds will go to the Everest Centre for Research which is a collaboration across DKFZ in Heidelberg , Germany, Great Ormond Street Hospital London and the Blizard Institute in London. Research is conducted into developing new treatments and finding tailored treatments to improve the quality of survival and helping to halve the harm that brain tumours have on children and their families.
You possess the power to change lives and contribute to pioneering research that offers hope to families like Alex's. Join us in supporting Martin and his team as they ascend the Swiss Alps, not merely in pursuit of a mountain's peak, but in pursuit of a future where every individual diagnosed with DLGNT, like Alex, has the chance to reach for their dreams rather than fight for their lives.
Alex is a singer and song writer known as Syren and if you click the link below, he will tell you his story in his own words.