On Sunday 6th October 2019 myself and my sister Demi will be running the Leicester half marathon to raise money for the Cystic Fibrosis Trust, which is a Charity very close to our hearts.

2 and a half years ago on 11th February 2017, we welcomed our beautiful Daughter, Amelie-Rose Sullivan into the world. After an emotional 12 days in hospital, Amelie was unexpectedly diagnosed with Cystic Fibrosis and CF has became part of our lives ever since.

Everyday we have to give Amelie a number of medications...including enzymes capsules before anything she eats as CF not only affects the lungs, but also the digestive system and as a result she is unable to absorb the fat and protein in her food without these. Daily antibiotics, salt supplement, vitamins, oral antibiotics and at least 15 minutes of physio as also needed at a minimum. You do not get a day off from Cystic Fibrosis...Birthdays, Christmas and Holidays- medication and physio is vital! 

CF is a progressive condition which worsens with age. Currently, half of those with CF will not live past age 41. As a Mum how do you ever accept that or even try to get your head around it?...well you don’t. It’s honestly hard for me to even type that statistic as it’s something which since Amelie’s diagnostic I have blocked out. I do not accept it and I live in hope and believe that with all the fundraising and continuing drug developments made possible by fundraising that by the time Amelie is an adult her life expectancy will be the same as any other child born today- and that is why we continue to fundraise and ask for you to help us raise as much as we can...we NEVER give up. 

Those who know us know if we have arranged to see you, we are always checking if you are well before we visit or meet up. This is because we have to keep Amelie as well as possible. Therefore avoiding people with coughs, colds and illness has become our norm as it is really important for Amelie’s health. A common cold to you is no big deal but may cause Amelie to need extra medication, extra physio or at least 2 weeks of intravenous antibiotics in hospital and potential irreversible damage to her lungs. 

Having said that we do not let Amelie live in a ‘Bubble’. We are always on the go doing something, we go on lots of lovely holidays and enjoy lots of play dates with friends and family and do not let CF hold us back. We try to live by the motto; ‘Amelie has CF, CF does NOT have her’

Amelie is such a happy, cheeky and confident little girl and all I want as her mum is for her to have the chance to grow up and live a long and happy life without constant struggle!

This is by far the biggest physical challenge either myself or Demi will have endured and Amelie will be on our minds every single step of the race! It will be the thought of her and what the money we have raised will go towards achieving, that will get both myself and Demi across that finish line.

Cystic Fibrosis is a genetic condition affecting around 10,800 people in the UK. You are born with it and cannot catch it later in life, but 1 in 25 of us carried the faulty gene that causes it, usually without knowing. 

The gene affected by CF controls the movement of salt and water in and out of cells. Due to this inbalance people with cystic fibrosis 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- Sadly there is no cure.

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. Medical science, research and development over the last number of years has come on no end and will continue in order to give a better life for cystic fibrosis sufferers. Money raised will be helping to find new medications which will make for a better life for Amelie and her fellow CF sufferers but ultimately, hopefully, one day..A CURE! 

Please give what you can and help us get closer to making CF stand for Cure Found. As always we really appreciate your support and donations and are eternally grateful.