I'm hosting a coffee morning on Wednesday 17 September to support Jack Thomas, a 1 year old boy who suffers from a devastating, life limiting genetic condition.

Jack was born in July 2024, and at just 9 weeks old, he was rushed into intensive care after a life-threatening seizure. Genetic testing later revealed a devastating diagnosis: Jack has a rare mutation of the PPFIBP1 gene, which causes drug-resistant epilepsy, global developmental delay, and blindness.

There are only 15 known cases of this condition worldwide, and Jack is the only known child in the UK with it. There is no treatment, no roadmap — just uncertainty and constant worry.

Jack's family are fundraising to give Jack the support, comfort, and an environment he needs — and to relieve some of the growing pressure on the family. Your donations will help with:

• A specialist pushchair and P-Pod (NHS waiting lists are long, and Jack urgently needs proper seating)

• A sensory room in Jack’s bedroom to stimulate his development and calm his senses

• Finishing home renovations (plastering and flooring) to create a larger, accessible living space for Jack’s equipment

• Travel costs for frequent emergency hospital admissions

• Special treats and days out for Jack’s siblings, who are incredibly strong but feeling the emotional strain

Thank you for reading Jack's story and for supporting his family with love, generosity, and hope.