Beckwith-wiedemann syndrome research - Wilms Tumours

Hello, my name is Lottie and mum to Ziyah.

Beckwith-wiedemann syndrome is something you've probably never heard of before. Putting it simply (BWS) is a genetic disorder that causes overgrowth and affects many parts of the body. It's usually recognized at birth, but the severity varies widely between children. Some may only have one subtle feature, while others have several. BWS is associated with an increased risk of developing certain childhood cancers, particularly Wilms tumor (kidney) and hepatoblastoma (liver).

All variants of BWS are genetic, some are hereditary others are just a complete lack of luck in genetics. Our daughter sits in the "complete lack of luck in genetics" department and was diagnosed with variant IC1 when she was 25 months old after a very long, emotionally exhausting genetic testing process which, on multiple occasions came back negative; it was parental intuition and fighting with the NHS that finally had her diagnosed through a Buccal swab.

When you hear that your child has BWS, its heart wrenching. The unknowns are painful and being told your child is at an increased risk of developing cancer under the age of 7 is frankly just scary.

But, there has been an incredible breakthrough in the research of Wilms Tumours and how they can be treated, something that will give the rare few and unfortunate parents hope, that if that dreaded day ever may come or worse yet if its already here, that there may just be a treatment that can save their little ones life. Wilms Tumour research NHS

So, I would love to give as much as I can to Cambridge University to continue their research and produce a treatment to help children that dont deserve to be in this position.

I'd appreciate any little or large contribution and am happy to answer any questions anyone may have on the syndrome, donation or anything else.

Thank you