This October, Jamie, Louie, grandma (Caroline) nanny (Joanne) and grandad (Andy) are walking/jogging/running 5km at Harewood House, to help make sure everybody with CF can live a life unlimited. My fundraising will be helping Cystic Fibrosis Trust fund vital research as they race towards effective treatments for all.

Having the family support at this event means so much to us, as we continue to raise money to help find a cure to this awful genetic disease

Alfie’s Story

At 36 weeks pregnant, Alfie had to be delivered by emergency C-section after scans showed concerns with his bowel. Shortly after birth, he became unresponsive and rushed straight into surgery. Doctors discovered that his bowel had twisted and perforated due to meconium ileus, where the meconium had become so thick and sticky it was like silly string. This caused his bowel to burst, and the surgeons had to wash his organs free from the leaked meconium.

From that moment, the doctors suspected cystic fibrosis, but it wasn't until Alfie was three weeks old that we received the official diagnosis through his heel prick test. Cystic fibrosis is a rare genetic condition that mainly affects the lungs, pancreas, and digestive system. It happens because the cells in the body can't move salt and water properly, which leads to a build-up of thick, sticky mucus. This mucus clogs the lungs and pancreas, making it hard to breathe, harder to digest food, and causing frequent lung infections.

For Alfie, even something as small as a cough or cold can quickly turn serious, leading to infections that put his health at risk.

From that moment on, life with cystic fibrosis has been far from easy. Shortly after his first surgery, Alfie developed adhesions that led to sepsis, meaning he needed even more surgeries to re-route his bowel. To date, he has been through seven major surgeries and spent 19 hospital admissions fighting bacterial infections and blockages. In total, we spent almost an entire year living in hospital, away from home.

When Alfie was 13 months old, he became eligible for an incredible treatment called Orkambi which is a life-changing medication for children with cystic fibrosis. Since starting it, Alfie's health has improved so much, he's had fewer bacterial infections, fewer blockages, and even his salt levels, which were once dangerously high at 109 mmol/L, have dropped to 72 mmol/L.

Despite everything he's been through, Alfie continues to amaze us every single day with his strength, resilience, and infectious smile. He has faced more in his little life than most people will face in a lifetime, yet he never gives up. His bravery and spirit inspire everyone around him.

We are so grateful for the incredible medical teams, research, and charities that make treatments like Orkambi possible. Without them, Alfie's journey could have looked very different, and their support has given him the chance to live a brighter, healthier life.

But cystic fibrosis is still a life-limiting condition, and there is currently no cure. We won't stop fighting, fundraising, and raising awareness until that cure is found. Not just for Alfie, but for every child and family living with this condition. Every bit of support truly makes a difference and brings us one step closer to that day.

Together, we can make sure everyone with CF can look forward to a brighter future.