Written by Ben Moody
As a parent, nothing prepares you for the moment that you're told your child has bone cancer. The shock, the fear, the uncertainty – these emotions flood in and never quite leave.
But even more devestating than the diagnosis is the realisation that, despite the treatments, medications and hope you cling onto, you may one day outlive your child.
For my family, this was the painful reality when our beautiful daughter, Claire, passed away from osteosarcoma in 2016, aged 24.
As every osteosarcoma parent will know, this is a disease that tears families apart with brutal unpredictability. Claire's journey was filled with hope and heartbreak in equal measure. We were beside her every step of the way, from chemotherapy to surgery, praying for a breakthrough.
Claire was diagnosed with osteosarcoma in her left femur in 2012. Despite treatment that took its ruthless toll on her body, my daughter's cancer returned. In the end, there were no more treatment options for her, and she died leaving a hole in our hearts that will never heal.
As I reflect on our experience, I feel a mixture of grief and hope after hearing the recent news that GSK's targeted antibody drug has been granted Breakthrough Therapy Designation by the US Food and Drug Administration (FDA) for relapsed osteosarcoma patients.
This decision is, I hope, a big step forwards for families like mine — families who face the painful realisation that there's nothing left to try. For so many people who have seen their children suffer, this breakthrough therapy could change everything. I can't help but think of all the young people suffering like Claire suffered, and the parents who are holding their breath hoping for a miracle.
To them I say: you are not alone. While we may have lost our daughter, we will never stop fundraising for awareness and research, because every child deserves a chance.
Claire's legacy will live on in the hope that GSK'227 and other emerging treatments could help save lives. The breakthrough designation is not only a scientific advancement, it's a testament to all the families and loved ones whose lives have been cut tragically short.
For parents like me, the pain of losing a child will never go away. But, as we move forward, we hope that no other family has to experience what we did. I am very thankful that new and promising treatments, like GSK'227, are now being developed. A special thank you to all the doctors, researchers, organisations (in particular the Bone Cancer Research Trust), and to everyone working towards a world where bone cancer is cured.
May our children's stories, and their memory, continue to drive us forwards
4th September 1991 - 11th August 2016
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