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Darshan is 9. He is a bright young boy, an avid swimmer and skier and thought of by so many as gentle, caring of others and always smiling. His life changed on 5th April 2017 when he was diagnosed with a rare and inoperable cancerous brain tumour. After several neurosurgery procedures to perform biopsies as well as release fluid in his brain, Darshan received intensive physiotherapy to address post-operative trauma. The first two months were filled with a great degree of uncertainty and fear for the family.
Darshan was finally able to commence treatment at the Oxford University Children’s hospital at the end of May, based on the diagnosis of a Germ Cell brain tumour (likely Germinoma). The treatment prescribed was a paediatric protocol combining chemotherapy followed by radiotherapy – both of which would present short and long term side effects. Darshan and his 7-year-old sister Anees, attend a very supportive school. A strong network of family and friends, the school community, along with psychotherapy has helped to ensure that the family has remained resilient and positive.
As chemotherapy took its course, his parents Samreen and Fraser researched radiotherapy options. Despite being encouraged to undergo traditional ‘photon’ based radiotherapy available in the UK, the family learned that a less toxic but also effective technology using ‘proton’ beams would help to maximise Darshan's quality of life. As a result, Darshan's parents were determined to find a way for Darshan to receive this treatment. Proton beam therapy offers Darshan the greatest chance of eradicating his cancerous tumour and significantly reducing the side-effects that traditional radiotherapy threatens. These include cognitive impairment (reduced IQ), the need for life-long annual growth hormone replacement treatment, a greater risk of recurrence and lower life expectancy.
The NHS has a very limited overseas referral programme where it transfers a small number of paediatric patients for treatment in the US. Unfortunately, Darshan’s application was rejected despite Germ Cell tumours being until very recently considered for the overseas programme, and these specific tumours will also be treated in the UK using proton beam when new NHS Proton Centres are planned to open in 2018. But this is simply not soon enough for Darshan.
The family nevertheless organised treatment at the Massachusetts General Hospital in Boston. Treatment in the US, which commenced on 18 September and will last 5-6 weeks, comes at enormous cost and disruption. Whilst they have fortunately managed in the immediate term to cover the significant proton beam radiotherapy and travel-related costs, treatment costs are already rising. They also find themselves with substantially reduced work and earning capacity whilst dealing with Darshan's medical needs.
Friends and family are always asking how they can support and financially contribute.
This fundraiser has therefore been set up to help cover those costs but also act as a safety net, in the event of unforeseeable medical and/or travel expenses related to Darshan's treatment.
The family also plans to use the funds to support the hospitals, charities and research organisations that have been instrumental in enabling them to navigate this turbulent journey. Research into brain tumours is severely underfunded. The role that nutrition plays in treatment is poorly understood. Charities that support children and their families ‘in the moment’ rely on donations and the goodwill of people.
Darshan and his family will be eternally grateful for any contributions that will support Darshan's journey and help others in the future.
Our close family friend Shiv Sharma, who resides in New York City has kindly agreed to manage and transfer the funds for this campaign to us.
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