Millie, who has Alagille syndrome, featured on the front cover of Delivery magazine in 2002, with her dad, who had run the London Marathon. Here her mum, Alison, explains why fundraising is important to her family.
Caption: Millie on the front cover of Delivery
Liver disease in children is quite rare, and when your child is diagnosed you will almost certainly not know anyone else affected, and probably will not have even heard of the condition! This can be a scary time for everyone. When Millie was first diagnosed with Alagilles syndrome aged just six weeks, the information leaflets we were given came from CLDF. Our awareness of the charity increased further, however, when we subsequently spent three months with her at Birmingham Children’s Hospital. We were a long way from home with a very sick child and the CLDF team provided invaluable support during that time with ward visits, a friendly face and someone to talk to.
Over the years, we have attended different CLDF events like the conference and family days. These have given us the opportunity to meet other families affected by liver disease, to share experiences and to learn more about specific aspects of liver disease, transplantation and the care of these conditions. This can be particularly important to people at different points, such as at transition from child to adult services.
We are hugely grateful to the NHS and all the healthcare professionals who have looked after Millie over the years, but it is also really important that there is an organisation like CLDF there for children and families affected by liver disease – providing information and support, raising the profile of children’s liver disease and funding research. After Millie’s transplant we were keen to ‘give something back’, and to recognise the support we had had. Her dad, Bill, did the London Marathon and it was great to be part of the CLDF team of runners. Since then we have done a few other fundraisers and we also give a regular (small) donation. CLDF relies on donations, and it vital that they can continue to operate and provide the services that we benefited from for other families in the future.
Millie, who is now 19 and a student at Dundee University, tells how CLDF has helped her.
I don’t remember exactly when I started to properly become aware of my condition – for me it is something I’ve also known. My parents have always been open about my condition, and answered all my questions. I was aware of things like having an NG tube (which I called ‘boo’ – my dolly had a tube too) and a scar (my ‘line’) on my tummy and knew these made me different from other children. Other children would sometimes ask about these, and I would tell them that I had a new liver.
But growing up, I had countless hospital appointments. This often meant missing out on school or doing things with friends. To be able to cope with this, I always had to understand why I was in hospital and I would ask the doctors and other staff plenty of questions. The staff who have looked after me in hospital have always been great. I have now transferred to the adult hospital – they are all lovely too, but it’s not the same as being at the children’s hospital where everyone knew me! I think this is why I have always enjoyed CLDF events where I’ve been able to meet other young people like me who have had to also spend time in hospital and understand what it’s like.
I’m lucky in that my friends have always understood and supported me with anything to do with my condition so I don’t feel it has stopped me doing things. I have been on lots of different school trips (including to South Africa) and do lots of different sports. My transplant has also given me some great opportunities. I have competed at the Transplant Games since I was six and have been lucky enough to compete at two World Transplant Games.
Growing up, CLDF has always been there. When I was little, I enjoyed the family days with my parents and as I’ve got older, I’ve found that meeting other young people has helped me loads. It’s great to be able to talk to people who have been through similar things to me and understand what it’s like to live with a liver condition. I have met some amazing friends through CLDF events. I have particularly enjoyed Talk Tell Transform and making a video of my story – I would really recommend this it to others.
My advice for other young people with a liver condition would be to use CLDF. Read their guides, talk to their staff and go to the different events they do. I think it is important to take the time to learn about and understand your liver condition and not be afraid to ask any questions you may have. I would also say don’t let your liver condition hold you back or define you. And try to look at it in a positive way as best you can!
Caption: Millie today