We’re walking/jogging/running at Harewood House, this October, to help make sure everybody with CF can live a life unlimited. Our fundraising will be helping Cystic Fibrosis Trust fund vital research as they race towards effective treatments for all.

On 9th May 2024, at just 2.5 weeks old, our beautiful baby girl was diagnosed with cystic fibrosis. It was discovered from her heel prick test, which tests for 9 rare but serious genetic conditions.

Cystic fibrosis (CF) is a genetic condition affecting over 11,000 people in the UK. One in 25 of us are carriers of the faulty gene that causes it, usually without knowing, as it is not something we are tested for. There is a 1 in 4 chance of a baby having CF if both parents are carriers of the faulty gene.

The gene affected by CF controls the movement of salt and water in and out of cells. People with CF experience a build up of thick, sticky mucus in the lungs, digestive system and other organs.

Maya has lots of hospital appointments and has a big team looking after her. They are all incredible and we are so grateful for them. She also has to have regular eye tests, blood tests and xrays to monitor how she is doing.

Maya has lots of treatment to enable her to live a longer, healthier life. This includes lots of different medication, physiotherapy, a special diet and exercise.

As her pancreas cannot produce enzymes, she is given enzymes before every feed (food or milk) in the form of creon. Without this, her body cannot absorb the nutrients from food.

Maya has 20 minutes of physiotherapy every morning, and 20 minutes every evening. These sessions consist of 10 minutes vigorous bouncing on an exercise ball, and 10 minutes of percussion (tapping all around the lung area - front, side, back).

In May, Maya had an exacerbation of her CF and was in hospital for just under 3 weeks. She went through a lot during this time, and we are so proud of how she handled her treatment 💛