We’re always saying ‘we’re here for you’ so we’re very grateful to Jemima, mum to Halima, for sharing her story of how CLDF can help.
Halima was diagnosed with biliary atresia when she was eight weeks old and had her Kasai at nine weeks. Unfortunately, this failed, and she was put on the transplant list. We were lucky that she received a successful liver transplant at 18 months of age.
I first contacted CLDF after both a parent and staff from the hospital recommended them to me around the time of Halima’s Kasai. I’ve always found Kate to be very supportive right from my first communication. She provided me with information to help me understand Hali’s liver disease as well as discussing my own condition (I have ulcerative colitis). We also spoke about the challenges which come with having a poorly child.
Since then, Kate has supported me in various ways, from providing information for Hali’s school, helping me apply for benefits, providing me with supporting letters for various reasons, or just listening to me. Sometimes it’s a phone or a video call but even if I just email her with a question, I know she’ll come back to me.
All of this has had a huge impact on how I cope with Hali’s condition. I have a better understanding of how to care for her, support my other children and also to give myself some grace aswell.
All parents in my situation will know that life after transplant isn’t always plain sailing. In March 2022, Halima had major surgery with some complications. She became very unwell and took time to recover. Because of this, she has to take some additional medication which has had some negative side effects. However, she is now doing well, thriving in school and is just a happy little girl and a lovely little character.
After coming through that rough time, I took her to Disneyland Paris for her seventh birthday this year. She’s wanted to go since she was five, so it felt really special.
I would say to any parent in my situation there is great benefit in contacting CLDF. There is so much information and support directly relevant to your circumstances and sometimes it just helps to speak to someone who has an understanding of what you might be going through.
If you think you might benefit from our support, please get in touch here.
