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How It Started

Ben’s Heroes Trust started on 10 December 2011, exactly one year after the passing of Ben Loyns, by his parents and family friends who wanted to ensure that parents/guardians that find themselves in the position of having to finance a trip so their child can access a potentially lifesaving drug have somewhere to turn for help.

 

Ben’s story began on the last Friday of the 2010 summer term, when he finished school excited about the summer holidays, like every other school boy, and went to a family BBQ to celebrate his uncle’s birthday.  Ben left the BBQ early as he felt unwell and by lunchtime the next morning Ben was in Southampton General Hospital complaining of chest pains and unable to stand up straight.

 

Within 24 hours of leaving the BBQ, following various tests, Ben and his parents were sat down and told that he had a tumour in his chest, the size of his fist, which was probably Cancer.  This was the first and last time that Ben cried or showed any fear for the remainder of his short life which ended less than 5 months later.

 

Towards the end of Ben’s treatment, as different combinations of Chemotherapy where tried and failed, Ben’s doctors acknowledged that they were running out of options and so his family and friends turned to the internet to search trial drugs.   After a week of reading various articles and websites they identified a new drug in America, that had just completed Phase 2 trials, that was in the process of having a licence applied for. Through various emails and telephone conversations the drug company agreed to provide the drug to Ben on compassionate grounds provided he went to America for the treatment.  At this point the family was faced with the daunting task of raising thousands of pounds to get Ben to America to access the treatment.  In the end Ben’s health deteriorated so quickly that he could not travel and soon after he passed away.  

 

After Ben’s passing his parents remembered vividly the feeling of utter helplessness and desperation they  felt when they were trying to find a treatment and work out how they could finance the trip to access it.  It was clear to them that there was a significant gap in the support networks offered by existing charities which they decided needed to be filled. Hence, Ben’s Heroes Trust came to be!

how it started