In January 2024 our beautiful 17 year old daughter was diagnosed with Desmoplastic Small Round Cell Tumour - a rare and aggressive sarcoma that affects just 12 people in the UK per year.

It has a 5 year survival rate of just 15%.

Liz died on thed 27th November 2024, just 10 months after her diagnosis.

When Liz was diagnosed DSRCT has no dedicated organisation fighting for funding. There is still no recognised treatment protocol. Finding information when Liz was first diagnosed was like hunting for a needle in a haystack. We are in the process of trying to change this - and have begun the process of setting up ‘The Desmoplastic Small Round Cell Tumour Charity.’ We hope that this charity will help to change things, enabling families like ours to have access to kinder treatments and better outcomes, as well as support from those who understand when they need it the most.

The first piece of research we aim to fund will bring together the information from across the wlorld into one usable document for physicians. We will share that information in an accessiblde format for patients and parents. It’s an important first step in advancing knowledge. From there we will go on to fund future research and support.

Liz had the best medical team we could ever have hoped for, but to change the outcome more research is needed. We hope that funds raised will raise awareness and help fund research into discreet treatments for DSRCT in the UK.

15% is too small a number. Together we can change that. Liz’s bucket list had a village that came along to try to try to help her achieve it. Let’s make this the final item and do her proud.

(N.B. Added to the above target is an additionl £4,200 which has been donted to Liz’s own GoFundMe in the last 24 hours)