On the 29th April 2021, our daughter Ottilie was diagnosed with Cystic Fibrosis. To any new parents, negative news about your child's health is upsetting. So you can only imagine, hearing the news about our baby girl having a chronic life shortening disease, is beyond anything we could ever imagine. Cystic Fybrosis is an invisible disease meaning many people are not aware of it or that people are living with it. For the last 3 weeks we have been in hospital with Ottilie, who’s been struggling with her digestive system, one of the many problems CF people deal with. 

Cystic fibrosis (CF) is a genetic condition affecting more than 10,600 people in the UK. You are born with CF and cannot catch it later in life, but 1 in 25 of us carries the faulty gene that causes it, usually without knowing. 1 in 2500 babies are born with Cystic Fibrosis. 

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, causing a wide range of challenging symptoms affecting the entire body. 

On the 18th June it is ‘wear yellow day’ for Cystic Fibrosis. We would love to raise some money for this incredible charity Cystic Fibrosis Trust, who for years have been funding research into new treatments and been campaigning to make life saving drugs available on the NHS for everyone who can benefit from them.

Life-saving drugs, also known as precision medicines, CFTR modulators and modulator therapies, work to tackle the underlying cause of cystic fibrosis.

Cystic Fibrosis Trust have been working alongside the CF community since the first CFTR modulator was licensed in 2015 to get access to all life-saving drugs for the people who need them. Since then, the campaign has intensified, and despite resounding proof as to the effectiveness of these drugs, they have faced huge challenges. After a sustained fight by the CF community and the Trust, Orkambi and Symkevi were finally made available on the NHS at the end of 2019.

Now that the latest therapy, Kaftrio, has received its European licence, they are working to ensure a smooth roll-out so that everyone with CF in the UK who is eligible for Kaftrio will get access.

Any money that is raised through our page, will be donated to Cystic Fibrosis Trust in the UK. So they can continue campaigning to make these life saving drugs available to all, and to invest in the development of new therapy and treatment for CF. 

Best wishes

Will, Jess and Ottilie (@thelittledreamer - instagram)