When your child is diagnosed with a liver disease, there’s nothing like the support of someone who knows exactly what you are going through. At CLDF, we love to bring families together and nowhere is this family network stronger than in Northern Ireland. We caught up with four mums to find out more.
Megan’s 12 year old son, Kody, has alpha-1 antitrypsin deficiency with portal hypertension.
“I first heard about CLDF back in 2010,” says Megan. I was taking Kody to an appointment at the liver clinic at the Royal Victoria in Belfast and I met a representative of the charity who was chatting to parents in the waiting room.”
Ethel was in Birmingham Children’s Hospital, where her baby daughter Grace, now eight, was being assessed for a liver transplant, when CLDF’s families officer visited the ward. Cat was also at Birmingham Children’s where her daughter, Abbie, now seven, underwent a Kasai procedure. She picked up some CLDF literature in the parents’ room. And when Marianne was in Birmingham Children’s where baby Lucyellen (eight years old) was undergoing transplant assessment, Lucyellen’s daddy popped into the CLDF office to get some advice and leaflets.
All four agree that receiving information on their child’s condition at an early stage made a huge difference.
“Knowing that there was someone out there that you could ask questions of and who could give you support when you really needed it was invaluable,” says Ethel. “Over the years CLDF have provided us all with information about our children’s liver conditions and the implications for them, as well as packs for nursery and school.”
When the opportunity arose to attend CLDF events in Northern Ireland, the families were keen to attend.
“The events have been so important to all of us liver families as it gave us an opportunity to get together, to meet other families living with liver disease and make new friends,” explains Cat. “We were able to chat and learn from each other, ask questions and have a bit of fun.”
The activity weekend at Todd’s Leap was a particular highlight. “It got people out of their comfort zones and made us liver mums do things we wouldn’t normally do like go on a fast jeep ride!” recalls Marianne. “The La Mon hotel meet up was good too as the kids got to do activities and the parents were able to relax and listen to some talks on new research and other experiences.
The jeep ride at Todd’s Leap took everyone out of their comfort zone!
In fact, the Northern Ireland mums find these get togethers so beneficial that they don’t wait for CLDF events.
“We have a Northern Ireland liver families Facebook page and have regular contact through Messenger and WhatsApp,” says Megan. “We arrange play dates with the kids and then us mums have been out a few times too for coffee and dinner. We’re also all members of the Royal Liver Support Group and they run local events too.”
A night out for Christmas 2017
Although real life get-togethers have been on hold throughout the pandemic, the group have continued to be there for each other.
“We’ve been able to join in Kate’s Zoom meetings in the past year for help and support where it’s been needed. And it was great to take part in a virtual session recently to give feedback to the EMBARK research company,” says Cat.
Fundraising for CLDF is another activity which also brings the Northern Ireland families together and they have given tremendous support to the charity over the years, particularly on Big Yellow Friday.
“The support we all received at the start when we first got the diagnosis of liver disease from CLDF was absolutely second to none,” explains Ethel. “So we felt that we had to give something back.”
“And we wouldn’t have met each other if it wasn’t for the events CLDF put on”, adds Marianne. “The charity does a wonderful job in bringing families living with liver disease together and encouraging them to help each other. So that’s what motivates us – we want to keep CLDF going for the future.”
The NI families are great supporters of Big Yellow Friday
If you would like to find out about connecting with families in your region, contact us at info@childliverdisease.org.
