Palace to Palace Cycle for Ayla & Cystic Fibrosis

My Granddaughter Ayla was diagnosed with Cystic Fibrosis at just 3 weeks old. Cystic Fibrosis is an inherited condition affecting 10,800+ people in the UK. 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.

 

Cystic Fibrosis is not something my family had ever thought about or knew much about, as there is no past history in my family or my son-in-law's family. As my daughter and her partner were both carriers of the gene without knowing, this meant that Ayla had a 1 in 4 chance of getting Cystic Fibrosis.

Currently there is no cure for Cystic Fibrosis. Advancements in medicine, and antibiotics, have helped with the condition but it still remains a devastating illness. 

In 2020, there was a massive change for 90% of people living with CF when the miracle drug, Kaftrio, entered the picture! Kaftrio has been hailed a wonder drug which tackles the underlying causes of the disease, by helping the lungs work effectively, increase lung capacity and slow down regression of lung function. Earlier this year, Kaftrio was approved for use in 6-12 year olds. They are now looking at getting this approved for 2 - 5 year olds!
 
Kaftrio is the drug all of us are desperately hopeful for, as currently, it's the only drug on the market which has the potential to prolong Ayla's life.

But we want more than this. We want a cure - so that everybody living with CF can be hopeful for a brighter future and healthier life. Your donation will go towards funding vital research to ensure that everybody living with CF can be confident that a diagnosis will not be a restriction in their life.

 

This has inspired me to take part in the Buckingham Palace to Windsor Castle bike ride, which is a 45 mile cycle between the two palaces and takes place on 25th September. 

Do you want to join me in making a difference? Thank you in advance for your contribution to this cause that means so much to our families.

 

Any donations will be greatly appreciated!

https://www.cysticfibrosis.org.uk/?msclkid=ea0b6416c56e11ec8f27057a1be1fe73