At just 16 months old, our little Phoebe was diagnosed with Schwachman Diamond Syndrome, a rare genetic condition affecting fewer than 100 individuals in the UK and around 1,500 to 2,000 across Europe and America. The rarity of this condition means that there is limited funding and knowledge available to support those affected. This fundraising effort aims to raise awareness and gather as much financial support as possible to help provide care for patients and their families, with the ultimate goal of finding a cure for SDS.

Our little girl is truly amazing! She radiates happiness and loves playing with her big sister. So far, she is doing well, and we remain hopeful for her continued progress. As someone who has always preferred the comfort of the couch over physical activity, participating in a personal marathon by running a 5k feels like an enormous challenge. However, I am determined to complete this event on April 20th, 2025, to show our girls that anything is possible!

If you are able to contribute any amount—no matter how small—please consider donating. Your generosity will directly impact families living with SDS and help us move closer to our goal of £150. Together, we can make a difference in the lives of those affected by this condition.