This August, our family is taking part in the Genes for Genes Walk (Ks for Kids) to raise funds for the Children's Medical Research Institute, supporting the scientists who are working today to find the treatments and cures of tomorrow.
This cause is deeply personal to us.
On 30 April 2026, our daughter Molly and her partner Hayden welcomed our beautiful second grandson, Benjamin. Just one hour after he was born, Benjamin experienced his first seizure. He continued to have frequent complex seizures and was later diagnosed with an incredibly rare genetic condition. At present, he is only the fourth known person in the world to have this condition, which is life-limiting.
Many of you also know our amazing Isaac, who was also born with a rare genetic condition. He will turn 20 at the end of this year and, after almost two decades of searching for answers, his genetics team now believe they have identified a syndrome that Isaac shares with only three other people worldwide. Isaac continues to amaze us every day with his resilience, determination, and the joy he brings to those around him.
We are walking this August in honour of Benjamin and Isaac, and for every child and family facing the uncertainty of a rare genetic condition.
Scientific research gives families hope. Every discovery helps us better understand these conditions and brings us one step closer to improved treatments, better support, and, one day, cures.
We are incredibly grateful for the love and support our family has received since Isaac was born, and more recently following Benjamin's arrival. It has meant more to us than words can express.
If you're able to support us, no matter how big or small the donation, you will be helping fund vital genetic research and giving hope to families like ours.
Every step we take is for Benjamin, Isaac, and every child living with a rare genetic condition. Thank you for helping us make every step count. ❤️
