The Jawwad family’s life was turned upside down in August 2017 when their daughter Maham, then 15, was diagnosed with liver cancer.
In addition to four sessions of chemotherapy, Maham was told she needed a liver transplant but the first operation in February 2018 was unsuccessful and she had to undergo a second just three days later. Although relieved that the second operation was a success, Maham and her parents were conscious that they knew nothing about liver disease in young people and wanted to know all they could about living with a liver transplant. So they were pleased when a nurse on the ward told them about CLDF and shortly afterwards a member of the charity’s support team came to visit Maham.
“We realised that CLDF was a good source of information so when we heard they were holding a conference and family weekend, it seemed ideal for us all to go along,” explains Maham’s mum Habiba. “We wanted to gain an insight into what is happening around us relating to liver conditions and the prospect of a day at Drayton Manor really appealed to our girls.
“We arranged for our youngest daughter to go into the creche and I must adnit I Initially thought that she wouldn’t cope well but she had a really interesting day which meant that we were free to make the most of the conference. Our other three daughters had the time of their life, especially Maham, since she is a very adventurous girl and loves going to theme parks. As soon as her doctor gave her go ahead to go on rides, she was absolutely thrilled!
“As parents we found the whole day so valuable, from listening to the doctors to hearing from other pepole who have had a liver transplant. We attended the session on Transition becaase in about a year Maham will be moving from paediatric to adult liver care and this helped us to prepare ourselves mentally and emotionally.
“It was great to meet other parents and listen to their worries and questions that we could relate to. We also met a girl who received a transplant at early age and is now a mentor at King’s College Hospital. She was kind enough to share her details with us so that Maham can get in touch with her at her own convenience.
“We met many parents and each story was inspirational and had an impact in itself. We realised that it’s not just us and our daughter who have been through a great ordeal, there are many other families in a similar or even worse situation.
“The highlight for us was definitely hearing from young people who had been so poorly or received a transplant when they were very young telling us about their lives now. As a parent you worry about your children’s future all the time and this had such a powerful impact. We have shared these stories with Maham and she too found them very inspiring.
“It was a great weekend and we would certainly be most happy to come back to conference next time.”