My son, Aarron was born 25th May 2008. At one day old he was jaundiced, he was given various tests and put in the UV bed, but it wasn’t getting better. Further tests at three days old revealed it wasn’t the normal baby jaundice and that there was potentially a liver problem. On day four he was taken to special care for more scans and tests, on day five he was given a preliminary diagnosis of Alagille Syndrome and discharged on a couple of meds on day six.
Aarron had a further year of tests and scans. A week after his first birthday he had a liver biopsy and his diagnosis was confirmed. A year after that he had severe pruritus (itch) and was wrapped in bandages. He had also been diagnosed with pulmonary stenosis and had had multiple NG tubes fitted then finally a gastronomy (peg). Up until now he has had 36 surgeries including a liver transplant.
Aarron aged seven, pictured with baby sister Sophia
The first time I heard of CLDF was from the new liver support nurse, at Glasgow Children’s Hospital, Jenny Cowiesen in 2011. She was helping to organise the first CLDF Scotland conference and asked me to speak at it, which I did. I don’t think there was a dry eye in the house. That was the first time I ever met anyone with the same condition as Aarron. At the same event I met the then CEO, Catherine Arkley and it was after this that I feel we got more of a voice in Scotland. Since then, there have been several events and we have attended them all – the Big Bear’s picnic in Stirling, the conference at Edinburgh Zoo, adventure weekend in Dalguise – and Aarron and his sister Sophia have had great fun. When Aarron had his transplant at Kings in 2016, he was critically ill at times and he had to spend four months in hospital. David from CLDF used to pop in every week, make us a cuppa and spend a long time chatting and offering help and support. It meant a lot at a very difficult time. Since then, we have met Kate who visits the clinics in Glasgow and is a great listener.
Over the years the CLDF have always been there. Meeting other families in a similar situation to us has been the biggest help. The exchanging of information and what’s available is invaluable. It’s the reason why we support Big Yellow Friday every year and have also run fundraising events at school and in my salon.
CLDF means a lot to Aarron. He loves the days where he can meet up and play with all his liver buddies. He says it’s the only time that his condition doesn’t matter to anyone or make him different – he can just be himself and have fun as all the kids are the same. He loves it and he loves chatting to Kate as he knows he is her superhero.
Aarron with his mum, Jacqueline
Since the pandemic, CLDF have tried very hard to keep everyone connected. We have taken part in a couple of Zoom events and it’s good to see everyone and try to give help and advice to new families. It’s just not the same as face to face but I’m sure we will all look forward to meeting up again in the future and have lots of funny stories to tell.
I feel as if the CLDF are always connected and switched on to the times that we are in. They have adapted when needed. The work they do, especially funding research and keeping everyone supported, is truly amazing. I feel in the future that a lot of mental health support may be needed for our children coming out of lockdown. I know our kids are used to being isolated in hospital for long periods and coped pretty well with the first lockdown. But I think, as everyone has experienced, this one has been a lot tougher. I’m sure CLDF will, as always, find new and innovative ways to support anyone who needs it. We can’t wait to be able to see everyone again soon.
