It is impossible to describe the feelings experienced when my wife Amber and I discovered our baby had cystic fibrosis (CF). The day we learned that our perfect baby has a chronic, life shortening, genetic condition shall be forever imprinted in our minds, it was a pain so raw and overwhelming that no words alone could ever capture.

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.

CF is often referred to as an ‘invisible disease’, as the
impact of the illness is often not immediately observable to others. For this
reason, the CF community exists largely unnoticed and invisible in itself, but
it is from the people within this community and their sheer resilience,
strength and compassion, that my own sudden dread for the future was
transformed into an unshakeable belief in hope and optimism.

To learn the extent of the challenges that so many CF
warriors not only face down and overcome on a daily basis, but continue to
thrive in spite of, has been both humbling and awesome. These same warriors
have been integral in blazing a trail in medical advancements over the past
decades. Volunteering for crucial clinical trials and studies that have been
decisive in the development of revolutionary modulator treatments, having
nothing less than a transformational impact on our daughter’s future outlook
and prospects.

To this community I owe a debt of gratitude that I can never
hope to repay. They have created a port in a storm for all afflicted by this
cruel condition, Amber, Charlotte and I have nothing but undiluted pride in
joining their ranks to fight this battle alongside our new CF family.

Since 1964 the Cystic Fibrosis Trust have supported those
living with CF and their families like no other. The charity are uniting people
to stop CF, funding vital research, improving care, fighting on behalf of the
community and racing towards effective treatments for all. The Cystic Fibrosis
Trust support people with CF to live longer, healthier, happier lives – and
won’t stop until everyone affected by CF can live a life unlimited.

Any money that is raised through our page shall be donated
directly to the Cystic Fibrosis Trust, enabling the continuation of all of
their critical support functions and to invest in the development of new
therapies and treatments for CF. Striding towards the ultimate goal for us all
– a cure.

Thank you.

Nick, Amber & Charlotte