When a very young child is diagnosed with a rare liver disease it can be difficult to look at the future with much hope. Here, Gina shares the story of her daughter Alice which she hopes will help other families.
Alice appeared perfectly healthy when she was born but when she was about six weeks old I took her to my GP because I was concerned about her enlarged tummy and the fact that she was still jaundiced. He sent us to our local hospital for blood tests and when the results came through we were referred to Kings College Hospital.
After lots more bloods and heartache we were given the awful news that Alice had Alpha I anti-trypsin deficiency. Kings were faultless in the information and care Alice went on to receive over the many years she attended appointments there.
When she was two, Alice became very ill and was admitted to Addenbrookes hospital. We informed Kings who advised us to prepare ourselves for the fact that that Alice may need a liver transplant. Her illness wasn’t due to her liver initially, it was a urine infection, but after three trips to the GP, they had failed to pick up on this – we were told she had a virus and that we should take her home and give her Calpol. It was only when she started to turn yellow they realised it wasn’t a virus and we were sent to Addenbrookes. The urine infection had gone to her kidneys and her liver had been affected too. Happily after a week’s stay and lots of antibiotics and tests, Alice bounced back.
Since then Alice has gone from strength to strength. She has always been a very determined young lady – she held down a full time job and four years at Uni at the same time. She obtained a first in her degree in Business and Finance and is now doing a further degree in accountancy alongside her job as an accounts analyst.
Alice never sits still, she is either at the gym every day or running. Her new found love is skiing which she started last year. I am so proud of Alice, she has so much drive and determination and always succeeds in what she sets out to do. She is now 25 and attends consultations every year for her lungs and every five years for her liver. She has never let her A1AD get in the way of anything she wants to do.This year she undertook the Three Peaks Challenge (climbing Ben Nevis, Scafell Pike and Snowdon in one weekend) to raise money for charity – Alice was fundraising for Children’s Liver Disease Foundation and her friend, Abbey did it for MIND. It’s a daunting challenge but they mastered it and although totally shattered, were thrilled at their achievement. The challenge raised £1470 for CLDF. We are delighted that this will help other young people to cope with the challenges of living with liver disease and I know that Alice has more fundraising planned for the future.
I really hope her story is an inspiration to other young people who live with A1AD.