Ava's story

Our beautiful 10 year old daughter Ava, was admitted to hospital on January 1st 2024 with sickness and generally feeling unwell. Within hours, Ava developed blood clots all over her body and her complexion turned yellow. Ava was critically ill and sent to the RVI hospital for specialist care. The condition aHUS was introduced to us. Within the next few days, Ava was deteriorating (whilst waiting for results) and it was decided to go ahead with the life saving treatment 'Eculizumab'. Within 24 hours, we saw Ava improving. Her kidney and liver function were beginning to recover and our little girl was coming back to us!

aHUS is an ultra - rare disease cause by a fault in the complement system. Left untreated it can be a life threatening illness and the majority of people would develop end stage kidney failure. At present there is no definitive test for aHUS - a diagnosis is usually made by performing blood tests - ruling out other causes.

Ava is currently on Ravulizumab which is given intravenously every 8 weeks. The Newcastle team are currently running trials to develop the treatment further. It is hoped one day there will be a tablet form of the drug and testing to identify aHUS.

On July 20th ourselves and a group of friends are doing The Yorkshire 3 Peaks Challenge. We aim to raise as much money as possible so treatments can be developed with the hope that one day there will be a cure!

Thank you so much for reading and any donation is greatly appreciated.

Thank you to Jonny, Graeme, Dean, Andy, Kerry, Liv, Tom and Luke for coming on this challenge with us.

A special thank you for the staff (Heroes) at the RVI for saving Ava's life - we'll be forever grateful.