Kasper’s Story

In November 2020, shortly before his 16th birthday, Kasper was diagnosed with a rare and aggressive childhood cancer – embryonal Rhabdomyosarcoma (eRMS). It was to be the first of many shocks on the cancer rollercoaster. He underwent surgery five times before being able to start intensive chemotherapy in January 2021. In May, while taking 10 GCSEs and still on chemo therapy, he underwent daily radiotherapy for 5 weeks. In September, his wish to be able to attend 6th form was fulfilled but as he started the school year, he was also starting a six month daily chemo maintenance programme with all the side effects that accompany it. The 5 year survival rate for Rhabdomyosarcoma can be as low as 20%. The overall survival rate after one relapse is around 10%.

During the last few months, thanks to funds raised for treatment outside of the standard of care protocols, Kasper has had genome sequencing carried out on his tumour, full molecular profiling and regular blood biopsies to monitor tumour activity. These are one component of personalised medicine.

As Kasper says, ‘This is the difference between bombing the building in the hope of obliterating the intruder or sending in a trained marksman.’

A new paradigm of personal medicine is on the cusp of emerging into mainstream practices and Kasper and his family have set up this charity to help current science drive new medicine for children with cancer today.

Kasper’s promise was that his data would be used for research.
Kasper’s hope is that children in the future will have a real chance of better outcomes through personalised, targeted medicine.