I cant believe we are doing this, but we are taking part in the born survivor 10k run. This will be a massive challenge and definitely not easy but considering the fight Lucas has every day just to stay healthy we can't complain and it only seemed right we pushed ourselves also.

Lucas was born at 37+6 in February 2018 and everything seemed perfect, he passed all his checks and the next day we were discharged ready to go and live life as a family of 5. Within a few days though we noticed Lucas was extremely uncomfortable after feeds, he was pooing upto 10 times a day and had lots of reflux he was constantly in pain and changed to a dairy free milk this unfortunately didn't help and over the months we tried lots of different things to help. As well as all of this Lucas was constantly getting poorly, chest infection after chest infection it felt like we lived at the doctors.

This continued for 8 months until Lucas ended up really poorly in hospital in the October on an airvo machine to help with his breathing. Luckily within a week he felt great and we were back home, whilst there he was started on 2 inhalers and an evening medication and was going to be seen in an outpatient clinic (this felt amazing, finally we would hopefully get him better). That wasn't the case and no matter what Lucas just continued to be unwell with his chest and bowels.

His doctor then decided to do a sweat test a test to check for cystic fibrosis, Lucas has problems with his bowels, frequent chest infection, reflux and was extremely sweaty and salty all signs of CF. Eventually in June 2019 when he was 16 months old we had a follow up clinic where we got his results.  Within 48 hours of that appointment we were at the children's hospital seeing a cystic fibrosis nurse and doctor we were there for hours soaking in all this new information that we needed to learn. A few of his medicines were switched and we left with lots of information the same week his nurse came to our house and so did a physiotherapist as we now needed to do physio twice a day.

It did turn out he wasn't allergic to diary which is great he loved his first bit of proper chocolate but he was pancreatic insufficient this means his pancreas does not produce enough enzymes to properly digest food. Fats in particular, are hard  to break down. Also fat-soluble vitamins A, D, E, and K may not be properly absorbed so Lucas now needs to take an enzyme called creon every time he eats or drinks food containing fat and take a special CF vitamin daily.

Lucas is four now, he is an amazing, brave, strong little boy, he fights harder than anybody I know just to stay well. However he has had one infection after another his amazing team originally thought this would improve within a year or so, but a CT scan showed Lucas has bronchiectasis also so now we have IVs for 2 weeks every 12 weeks in the hope to help the bronchiectasis but aswell as this Lucas has

3 nebulisers daily every day.

2 physio sessions each for around 20 minutes amd this is more when he is unwell.

And 11 other daily medications some of which can be upto 3 times a day.

This is every day, there is no day off fighting to stay well.

People with cystic fibrosis (CF) often look healthy, but it's a life-limiting condition that affects those living with it in many ways. Cystic fibrosis is a genetic condition that causes a build up of sticky mucus in the lungs. In healthy lungs, there is a thin layer of mucus but in people with CF, this mucus is much thicker and clogs the lungs, creating the perfect environment for harmful bacteria.

Harmful bacterias are found in lots of areas such as dirt and wet sand or even in bath toys and this means we are constantly having to assess what is and isn't safe for Lucas to do and often things others are doing he cannot do because it would just be to dangerous.

Cystic fibrosis doesn't just effect the lungs, People with CF face many symptoms as a result of the condition and the medications required to treat it can also effect the lungs, digestive system, bones, kidneys, liver and fertility.

Over the years research has advanced so much and there are some amazing drugs available to help upto 90% of people with Cystic Fibrosis although these drugs help they are not a cure and they are not available for 100% of people living with CF. Lucas is in the 10% who is NOT able to take the new medication and this means we must continue to fight and raise funds to help the cystic fibrosis trust continue the research we need so that one day CF will stand for CURE FOUND. We need to Fight for a life unlimited.

Cystic fibrosis (CF) is a genetic condition which causes sticky mucus to build up in the lungs and digestive system. It affects more than 10,800 people in the UK. One in 25 of us carries the faulty gene that causes it, usually without knowing. Cystic fibrosis comes with challenges, affecting our physical health, mental wellbeing and how we choose to live our lives. But our community is uniting towards the ultimate goal of effective treatment for all.Cystic Fibrosis Trust is the charity uniting people to stop cystic fibrosis.