Those who know myself and Lucy or follow me on social media will be aware of the huge impact our son Charlie had on our lives. Shortly after setting up this page Charlie peacefully passed away on Saturday 6th June with us both by his side. We are devastated but determined to follow through with our hope to raise awareness of and support the organisations that helped give Charlie such care and joy in his short life.

Charlie was born in at 34 weeks in September 2020 via emergency caesarean after suffering oxygen starvation for at least 40 minutes. After two very precarious months in neonatal intensive care the extent of Charlie’s injuries and symptoms gradually became apparent, with his main condition being spastic quadriplegia. Charlie also had an unsafe swallow and so was PEG fed; could not breathe safely at times without support; could not safely clear his airway and also had a rare type of epilepsy called Lennox-Gastaut syndrome. He thus required 24 hour care and we had the downstairs area of our home converted to accommodate a hoist, bathing facilities and allow wheelchair access.

Due to his life-limiting conditions he qualified for care from Ty Hafan, a children’s hospice local to us in South Wales who have been fantastic from early on in offering their services. Rather than simply provide end of life care, they’ve gone out of their way to integrate themselves in Charlie’s life and be a further network of support for our family, such as having staff visit Charlie in hospital, providing gifts and offering visits and stays in the hospice itself. It is a building which encourages positivity and hope, and you’d have to have a heart of stone to not want to give something back.

Alongside Charlie’s most recent illnesses and admissions have been my own health issues, as I was diagnosed with myeloma (a type of blood cancer) in April 2025. After 10 months of treatment including a stem cell transplant in December, I finally feel fit and well and optimistic about my own future. Myeloma is incurable but hopefully my remission will be lengthy and I can squeeze in as much as I can looking ahead.

So, I’ve decided on an event. Given my need to train and build my strength back up I’ve picked something over a year away, but hopefully this means that some of you will donate early and forget nearer the time that you’ve already done so! I’ve decided to embark on a nine-day trip to Peru, which centres on a trek to Machu Picchu. This involves 6-8 hours of trekking per day at altitudes of up to 4800m, camping with basic facilities and in remote areas en route. Those who know me best will testify that camping is my kryptonite so that makes this trip all the more challenging for me!

I’m self funding this trip, so every donation received will go straight to Ty Hafan for their own use rather than also covering my costs. I also plan to undertake several smaller events between now and next September in order to boost fundraising and raise further awareness for both my fundraising and for Ty Hafan themselves.

I’ve inevitably written more than I planned but hopefully that underlines the scale of the challenges we faced on a daily basis, and how worthy a cause Ty Hafan is. Please donate what you can and be assured that it will help make life more comfortable for seriously ill children and their families, as they did for us and continue to do so after Charlie’s passing. Thank you for reading.

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