Story
As someone who works at Ipswich Hospital, I’ve always wanted to give something back — but over the past year, that feeling has become even stronger!
After facing not only my own health challenges resulting in spinal surgery at the end of 2025, but also my children’s, I’ve decided to take on a charity abseil to raise awareness and support for a cause that means so much to us.
After many, many years of investigations here at Ipswich and Addenbrookes, on the 1st of May 2025, our daughter Kai was diagnosed with a rare genetic condition called: Pompe disease.
Our heartfelt thanks go to Dr Lane and the Rheumatology team at Ipswich Hospital for their incredible support and their relentless efforts to find answers to Kai’s struggles.
Kai is now under the care of Addenbrooke’s Hospital, where she is receiving lifelong, fortnightly Enzyme Replacement Therapy (ERT) infusions. While ERT can greatly improve quality of life and slow muscle degeneration, it unfortunately is not a cure.
Following her diagnosis, genetic testing revealed that our youngest son, Jacob, also has the disease and is currently undergoing tests at Great Ormond Street Hospital.
It’s something we’re now learning to navigate as a family — doing our best, sticking together, and laughing at whatever we can along the way!
This abseil is my way of turning our journey into something positive — raising awareness, giving back, and supporting others affected by rare genetic conditions like Pompe, more info on the Muscular Dystrophy UK website.
If you’re able to donate or share this out far & wide, we would be so very grateful 💙
Thank you 😊
