Cystic Fibrosis Awareness Day

For those who don’t know two of my boys, Aiden and Morgan have Cystic Fibrosis (CF). CF is the most common inherited genetic disease which affects mainly the lungs but also all other organs in the body.

There is currently no cure, but really recently new drugs have been unveiled and are working miracles on 1000’s of people with the condition.

Today of all days, ‘CF Awareness Day’, Morgan, became one of the lucky ones to be given this new drug!

Kaftrio was initially rolled out to those with the most common variant of CF, but has since been approved for those with one common and one rare gene – which Morgan has.

It’s not all straight forward due to other complications in Morgan’s CF profile, which will have an impact on the dosage and combination of drugs that can be prescribed, but none the less, this is such an exciting day and one which we have waited, quite literally, a lifetime for.

It’s such a significant breakthrough which fills us with joy and hope for the future, not just for Morgan but for all those living with this condition.

Aiden has yet to be offered it, but hopefully his time will come soon.

We had always lived in hope that this day would come. We were always told – work as hard as you can to keep the boy’s lungs in the best possible condition so that they will be in the best shape if a treatment becomes available. 18 years later – here we are!

On such an exciting day, with the England football team striving to do their country proud, Morgan is continuing to work on achieving his goal! To be the first person with CF to become a professional goalkeeper. You never know one day he could be striving to do his country proud!

Today he signed for a newly formed team with Truro City, training with the 1st team and having the opportunity to play pre season games with them, where he will to do his absolute best to learn, develop and prove his worth for the future.

Just as all those involved in creating this new drug did for the Cf community, Morgan understands the importance of never giving up. His determination to reach for the top drives him forward everyday.

Morgan, we are so proud of you! Your determination to stay fit, exercise intensely and follow your dream has got you to where you are now. Keep going and never give up.

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