At just under 4 weeks old our little man, Arlo, was diagnosed with cystic fibrosis - a cause already close to our hearts due to one of our best friends having cystic fibrosis. 

The following few weeks opened my eyes to all things cystic fibrosis and also how few people are aware of the many things that make up the condition - how it doesn’t just affect the lungs but also the pancreas and other areas of life. There’s so much day to day management for someone with cystic fibrosis - physio and medication becomes part of the daily routine for a family with a CF baby.

Luckily this is not the ‘death sentence’ it once was (there was actually a saying years ago “Cursed is the child that tastes of salt” because babies with CF have higher salt levels in their sweat and before they knew what CF was, babies with CF did not live long at all). But it’s so much more positive for our family today - and this is thanks to research and drug developments in recent years. So we are hopeful for Arlo’s future.

But there is still so much to be done and so much support needed for those with CF and their families.

The Cystic Fibrosis Trust is a charity that encompasses everything from supporting those with CF, working closely on research and drug developments, and helping raise awareness of the condition.

Throughout 2021 I will be running 1,083 miles - the distance from Lands End to John O’Groats to raise money for the Cystic Fibrosis Trust - and to raise awareness of the condition.

Please sponsor me - and maybe even join me on one of my runs - the more the merrier!!

From the Cystic Fibrosis Trust website:

Cystic fibrosis (CF) is a life-limiting genetic condition affecting more than 10,000 people across the UK. It affects the lungs and digestive system and can cause chronic infections and reduced lung function. Currently, half of those with CF will not live past age 41.The Cystic Fibrosis Trust is fighting for a brighter future for people with CF and their families by funding cutting-edge research, driving up standards of care and supporting people with the condition and their loved ones every step of the way.