Little Ava Taylor is throwing (and running and jumping) herself into the summer 2014 Transplant Games – just 10 months after a life-saving liver transplant.
The six-year-old from Golcar underwent a nine-hour operation at Leeds General Infirmary after doctors advised it was her best chance of leading a normal life after she was born with a very rare enzyme deficiency in her liver which could have killed her.
At just seven months she was diagnosed with ornithine transcarbamylase (OTC) deficiency which means her body builds up dangerous levels of ammonia and need constant monitoring.
The call-up for the operation came just two days after her mum had been tested and given the all-clear as a match.
Her mum, Caroline, a staff nurse in ICU at HRI, knew from early on that her daughter wasn’t developing the same way her older brother, Freddie, had and repeatedly went to her GPs knowing something was wrong. Eventually the condition was diagnosed during a visit to hospital and just before her fifth birthday Caroline was given the choice of whether she wanted her daughter to join the waiting list for a transplant.
Caroline said: “It was difficult as I had a choice. We could have carried on monitoring everything Ava ate and watching her so closely but she didn’t have the quality of life I wanted for my daughter. In the end I decided the risk had to be taken for Ava.”
The family only know Ava’s donor was a 20-year-old man and at the start of the Transplant games in Bolton in there will be a lap on honour in all of the donors’ memories. She is one of the Leeds Little Livers team – all children who have undergone transplants.
The family hope that soon Ava’s feeding tube into her stomach will be removed and the Transplant Games is the biggest sign yet their little girl is well on the road to recovery.
Caroline adds: “She is a bright, little six-year-old and we can all look forward to her having a proper childhood now. Now she is learning more quickly and down the line she will be able to do normal little girl things like go to tea at her friends and live a normal life.
“The donor has changed all our lives for the better. It is impossible to over-estimate how grateful all our family are.”
The family have written to the transplant team a thank-you and hope to hear eventually from the donor’s family.
Through the family have been supported by The Liver Foundation and through the charity CLIMB – Children Living with Inherited Metabollic condition.