Eight-year-old Rayhan has always been incredibly understanding about his little sister’s liver condition. So, when the chance came for him to fulfil a long-held ambition, his family decided to turn it into something even more meaningful, a fundraiser for Children’s Liver Disease Foundation (CLDF). His mum, Nosheen, explains why.
Rayhan has always been fit and healthy, so when his twin sisters were born four years later and arrived prematurely, I wasn’t especially worried. This isn’t unusual for twins and, at first, both girls did really well.
Quite early on, however, I noticed differences between the two. Aleyna’s stool colour was lighter than her sister’s and her jaundice took longer to resolve. These were the first signs that something was not right.
After a series of investigations, including an abdominal ultrasound and blood tests, Aleyna was referred to King’s College Hospital. She was diagnosed with a rare liver condition called biliary atresia and underwent the Kasai procedure at just six weeks old. Timing is critical with this operation, and outcomes are far better when it’s performed before eight weeks of age.
Since her Kasai, Aleyna’s journey has been challenging. She has experienced complications including portal hypertension, gastrointestinal bleeds, varices, and recurrent infections. However, the liver team at King’s have been incredible in managing her care and I have to thank the NHS for their service.
Despite her difficult start, Aleyna is a happy and resilient three-year-old. She approaches life with joy and determination, reminding us daily of the importance of hope and gratitude. We’re delighted that she will soon be starting nursery alongside her twin sister, Alesha.
Her experience has brought our family closer together and highlighted the importance of raising awareness about biliary atresia and childhood liver disease. We remain committed to supporting her in every way possible and to helping others understand this rare condition.
We are fortunate to have a wonderful network of family and friends around us, and the support from Children’s Liver Disease Foundation (CLDF) has been invaluable. Kate, in particular, has been a superstar, always patient on the phone and offering a much-needed listening ear during difficult moments. The information and learning packs have also been fantastic, helping us and others to better understand Aleyna’s condition and feel more confident in managing her care.
Aleyna is also very lucky to have her twin sister by her side, with whom she shares a special bond. And she absolutely adores her older brother Rayhan, who has shown great maturity and kindness throughout her journey. So, when the opportunity arose for Rayhan to try real rally driving, it made perfect sense for him to use it as a fundraiser for a charity that means so much to us.
Rallying is a long-standing passion in our family. My husband is a professional rally co-driver, and Langley Park Rally School, where he works, recently organised a 24-hour Driveathon charity event for the air ambulance service. The event gave adults and young drivers the chance to experience rally cars first-hand, and Rayhan was determined to be part of it.
Not only did he love the chance to get behind the wheel, but he also chose to raise awareness and funds for CLDF. This gave him a meaningful way to contribute and a wonderful opportunity to share Aleyna’s story with his school community, just before she begins her own journey at the same school.
Rayhan’s fundraising surpassed all expectations, raising over £1,000. It was inspiring to see how generous people can be when they understand the impact of childhood liver disease. Most importantly, Rayhan thoroughly enjoyed the experience. As he told us:
“It was the best feeling in the world. I really enjoyed myself. I definitely want to be a rally driver someday!”
There’s no doubt that a diagnosis of childhood liver disease creates a ‘new normal’ for any family. We do our best to minimise disruption for our other two children and really value how thoughtful Rayhan has been. He says he would like to do more fundraising in the future and we just hope it’s as much fun for him as this one was!
