One year old Alfie’s battle with cystic fibrosis

Alfie Kay was diagnosed with cystic fibrosis after he was born in March last year. His family are now fundraising. Catherine Scott reports.

ALfie Kay, one, is living with cystic fibrosis

Ten hours after Alfie Kay from Rotherham was born, he was admitted to Sheffield Children’s Hospital for emergency surgery. One year on his family celebrated his birthday by raising money for the hospital that cared for him.

During a routine test of pressing Alfie’s tummy after he was born in March last year, he began vomiting. An X-ray revealed abnormalities in his bowel and he was transferred to the Neonatal Surgical Unit at Sheffield Children’s.

Sign up to our daily newsletter

The i newsletter cut through the noise

Alfie under went surgery to correct a condition called Meconium ileus – a bowel obstruction which occurs when the meconium, which is a substance in the intestine, is thicker and stickier than normal, creating a blockage.

Alfie had to have emergency surgery just a few hours after he was born

“I was dressed and ready to go home and before we knew it, we were at Sheffield Children’s and Alfie was having surgery,” recalls mum Sophie. “When we were told they had discovered Meconium ileus they said that nine in ten babies with the condition go on to have Cystic Fibrosis, so we prepared ourselves that this might be the case for Alfie, and it was.” Cystic Fibrosis (CF) is a genetic disorder that affects mostly the lungs, but also the pancreas, liver, and intestine. Long-term issues include lung damage and coughing up mucus as a result of frequent lung infections.

“It all happened really quickly, Alfie had surgery on the Sunday, was tested for CF on the Monday and we were diagnosed by the Friday. Our lives completely changed in such a short space of time,” says Sophie.

“While we were in the hospital, the team from the Cystic Fibrosis Unit visited us every day from physios to dietitians, they taught us how to do Alfie’s physio and manage his diet at home.” Alfie’s diagnosis completely changed the lives of the whole family, but one year on Alfie has celebrated his first birthday and is living life as a happy toddler despite the challenges he faces.

“Alfie is a bubbly, happy little boy. He takes medicine every day and we do physio twice a day, patting around his chest to shake off any mucus. We also do 10 minutes of running around to get him out of breath and get his lungs moving.”

Alfie’s family have raised £350 for The Children’s Hospital Charity, to support the Cystic Fibrosis Unit where Alfie has regular check-ups and treatment. Donations have been made by family and friends in celebration of Alfie’s first birthday.

Sheffield Children’s is one of just 13 Cystic Fibrosis specialist centres in the UK. Donations to The Children’s Hospital Charity support wards and departments across Sheffield Children’s, including the Cystic Fibrosis Unit. The money raised is used to fund new facilities, specialist equipment for the unit such as spirometers and enhancements to the service.

To support Alfie’s first birthday fundraiser visit www.justgiving.com/fundraising/sophie-burtoft1.