Nori's Story

Nori was born with a rare syndrome called Beckwith Wiedemann Syndrome! This is a growth disorder which meant she was born with a very large tongue along with large kidneys and leg growing longer and fatter than the other. She spent 4 weeks in NICU when she was born and has since had 2 tongue reduction operations at GOSH in London.

A major part of the syndrome is that Nori is at a much higher risk of developing childhood cancers. She has had ultrasounds since birth every 3 months to check for tumours. Unfortunately in November last year our worst fears were confirmed and Nori was diagnosed with bilateral wilms tumours. This is tumours in both her kidneys.

She started chemotherapy straight away and has since had surgery to remove parts of both of her kidneys. She is currently doing well with the latest scans being mostly positive with just one area of concern at the moment which is being monitored closely. Chemo has been reduced from weekly to 4 weekly which has really helped Nori’s body to recover.

Thank you to Ben Saunders Foundation for this much needed break.