As a family we are raising money to help towards research into Alagille Syndrome, a rare genetic condition that not only took the life of Jason in 2017 a much loved husband and father at the age of only 47, but more recently saw our eldest son Daniel pass away very suddenly just days before his 25th birthday. This a condition that continues to affect the lives of two of our other children Dilan and Olivia but also impacts on the lives of their other siblings Megan and Jake who see how this condition impacts everyone’s lives on a daily basis. Alagille syndrome involves many different parts of the body including but not exclusively the heart, kidney and liver. Daniel as with all our children suffered more extensively from cardiac disease he had Aortic valve stenosis and a bicuspid Aortic valve found later to be a unicuspid valve. In 2021 he suffered a cardiac arrest and bleed on the brain requiring intensive care treatment at Kings College Hospital, he essentially recovered well from this but in December 2023 tragically passed away from sudden Cardiac failure. Dilan and Olivia also suffer from Cardiac Disease and have Atrial septal defects and pulmonary artery stenosis and stenosis of the branches, both have undergone surgical interventions for these and will require further treatment in the future. They have all suffered from liver involvement caused by abnormalities of the bile ducts as a result they suffer from itchy skin and xanthomas. These are just some of the ways this condition affects them as there are many more areas that this disease impacts their lives.

As a family with the support of many of our friends we will be raising money through various events the first one of which will be the 25k Ultra Peak Challenge. We wish to help support the Alagille Organisation conduct further research into this syndrome to not only help our family in the future but many other families that are also affected by this condition. Prior to my recent involvement with the organisation I had never met another family affected by Alagille’s syndrome but have now made connections with other families and learnt of the impact Alagille’s has had on them and been extremely touched by their stories. This has simply made me even more determined to help in the fight to not only increase awareness of Alagille’s but also the knowledge and understanding of this syndrome through research. Any money that you are able to donate now or in the future is gratefully received, with all money going directly to the Alagille Organisation for research purposes.