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I'm taking part in Ride for Precious Lives 2025 for Children's Hospice South West (CHSW), cycling over 200 miles across 3 counties over 3 days to raise vital funds for children and young people living with life limiting conditions and their families.

I’ve decided to take part in this challenge because I know first-hand the incredible work that CHSW do to support children with complex needs and their families.

On Christmas Day 2017, we were told that our youngest son, Joshua, had epilepsy and needed to start medication immediately. He was just five weeks old, and what should have been his first magical Christmas became a blur of four weeks in hospital. It was a terrifying and emotional time, not knowing what was happening with our little baby or what his future would look like.

Genetic testing later revealed that Josh’s epilepsy is caused by a mutation in the KCNA2 gene. At the time of diagnosis, there were only 50 known cases worldwide and we were overwhelmed by the lack of information about the condition. We’ve tried a range medications over the years, and Josh is now on three anti-epilepsy drugs. He’s also undergone multiples surgeries to implant a port for emergency medication, and a vagus nerve stimulation (VNS) device to help manage his seizures.

The unpredictability of his condition is exhausting. Special times of year, like Christmas, are now tainted by memories of rushing Josh to intensive care (over 100 miles away). In addition to his epilepsy, Josh has a range of complex needs; he struggles with communication and balance, and finds it hard to sleep. Each day can feel like a new struggle for our family to get through.

When a nurse from his school suggested we reach out to Little Harbour, our local CHSW hospice, we assumed it was just for end-of-life care and not for families like us. However, from the moment we walked through the doors on our first visit, Little Harbour felt like home, providing a chance to catch our breath and feel like a family again.

Josh has settled in during our stays at Little Harbour. He’s built relationships with the nurses, loves the sensory room, and spends hours running up and down the corridors. For us, the biggest gift is being able to sleep, knowing he’s safe and happy. The nursing team is incredible, and it’s a relief not to have to constantly monitor his heart rate or watch the camera at night.

For Sam, Little Harbour has been a lifeline. Sam has had to take on responsibilities far beyond his years as Josh’s big brother. When Josh’s illness began, Sam spent a lot of time with family and friends while we were at the hospital. It became his normal to wake up to find his grandparents in the house because we were at the hospital with Josh again. He’s seen countless paramedics rushing in and out of our house and has witnessed the daily challenge and terrifying reality of Josh’s seizures.

Little Harbour is where Sam gets to be himself, free from the weight of responsibility. From the moment we arrived, he felt at home and has made some incredible friends. He’s met other siblings in similar situations and found comfort in knowing he’s not alone. The incredible Sibling Team at Little Harbour have played an essential role in supporting him and helping us communicate with him about the challenges we face as a family.

For all of us, Little Harbour is our sanctuary—a place where we can finally just be ourselves, away from the constant pressures of daily life.

CHSW provide hospice care for children and young people with life-limiting conditions and their whole family across the region. The care they offer is wide ranging, including hospice breaks, sibling support, palliative care and end of life care.

Please help me reach my sponsorship target of £1,250!