Who you've helped

Two children a day are diagnosed with a life threatening liver disease.  CLDF’s first response programme costs £25,000 per year.  Through your efforts every family has immediate access to:

• An introduction pack at the hospital
• An easy to navigate website
• On-line medical, support and other information
• Families Officer at the end of a ‘phone or email

When Gracie was six months old she was diagnosed with hepatitis of the liver and the rare liver disease, alpha 1 antitrypsin deficiency.

“We knew nothing about liver disease in children and had certainly never heard of Alpha 1” says Gracie’s mum, Clare. “It was a really distressing time. But the hospital put us in touch with CLDF and that’s where we immediately got the information and support we so desperately needed – through leaflets, through telephone support and even face to face.  

“I know that Gracie’s condition won’t really affect her until she’s an adult when she may develop emphysema or have problems if she becomes pregnant” continues Clare. “And I want to be certain that CLDF will be there for her the way they were for us - with information and support so she will learn all about the implications of having Alpha 1 and be encouraged to manage her condition for herself and not see it as something that should hold her back.”

Day in, day out families live with childhood liver disease.  Meeting others, sharing experiences, swapping tips helps.  Through your generosity CLDF has been able to launch this £20,000 programme in 2011.

"We really enjoyed the event as a whole family. It was a great opportunity for my son to interact (and have fun) with other children with similar conditions outside of a hospital environment, which will be particularly important as he gets older. It was also helpful for us as parents to meet other families who have shared many of the same experiences as us - and gave us a chance to share some of the things we have learned along the way." - Emma Edwards.

At the end of 2009 special funding for our young persons officer ceased and became CLDF’s responsibility.  Big Yellow Friday has ensured we have a dedicated officer to develop and deliver a fantastic service to the young people growing up with a childhood liver disease.

Twelve year old Charlotte was born with the rare liver disease, biliary atresia and underwent a life-saving operation called a kasai when she was just four weeks old.

Charlotte says: “The worst thing about having liver disease is knowing that I am different to my friends and having blood tests although most people are quite surprised when I tell them what I have because they don’t notice anything different about me."

“I love being in touch with CLDF because they just get me and they give me support. The people there are lovely - they keep in touch to ask how I am and arrange loads of great things for us to do. I’ve made lots of friends who I don’t have to explain about liver disease to because they already understand.”