Hi, my name is Lydia, and I'm fundraising for my daughter Verity, who has been living with an extremely rare cancer for 9 years, a sarcoma of the abdomen called Desmoplastic Small Round Cell Tumour, or DSRCT. She's 26 now and it all began when she was 17.

Unfortunately, she was originally misdiagnosed, which has led us down a winding road of incorrect chemo, correct chemo, clinical trials and experimental drugs. She's been treated at the Royal Marsden as well as Bristol BHOC, our local hospital. Last year became very critical when she almost died of liver failure, and that's when I originally set up this fund. Fortunately she was given a life saving stent and has seen another whole year of life and experiences.

We are now facing another critical time as our drug options are down to one - Enhertu. According to worldwide research, and our worldwide friends with DSRCT, this drug Enhertu (Trastuzumab Deruxtecan or T-DXd) works effectively to reduce tumours and give patients more time to live. You might have seen it in the news last week as it has been approved for metastatic HER2 breast cancer.

Here is an article explaining the efficacy in DSRCT:

https://ascopubs.org/doi/10.1200/OA-25-00141

As the drug has to be prescribed off label for non approved cancers, we need to pay for it. It has to be administered every 3 weeks and costs £4,785 per dose. She is about to have the first dose in the next couple of days. Our goal is to raise enough money to pay for a year of treatment for Verity. There is a lot of research going on around the world to find a cure for DSRCT and doctors are hopeful this will be achieved in the next few years. Our goal is to keep Verity alive to see this day. Her spirit and determination have already defied the odds and she hopes and believes she will continue to defy. Verity is the most brave and inspiring person I've ever met, and my love for my precious child could not be any bigger.

I called her Verity, it's from the Latin word meaning 'truth', and boy does that suit her. Please read her article called 'Cost of Living', I've put it in the media above, it's a poignant reflection on what life means when yours is hanging in the balance.

Thank you all if you've read this far and please help if you can. If you can't we would be really grateful if you could share this page to anybody who can. It's an incredibly large goal!

Much appreciated ❤️