“We hope Luca can enjoy the world and all the opportunities he wants to”: Dad Jason shares Luca’s story
Luca is a really happy, chatty boy. He loves being cheeky and trying to make everyone laugh. He loves being outside and going climbing. He loves all types of vehicles, books and football. He loves to learn and is extremely inquisitive. Luca has a soft side and loves kisses and cuddles - he always asks family and friends for kisses on his hand.
Luca was diagnosed with CF at three weeks old from a newborn blood screening. We went on to find out he was one of only four people in the world with his genotype. He has done incredibly well throughout his CF journey and has only had one hospital admission so far, although he has had his fair share of antibiotics to help him along the way.
Luca has physio two to four times a day but lots of extra fun physio in between! He takes medications morning, night and throughout the day with food. He has appointments, check-ups and tests as needed. CF has become part of daily family life and our normal routine.
At 18 months old, Luca is already asking for “Pat Pats” (physio) and doing it himself. Although he has taken to it incredibly well, it hasn’t always been the easiest journey, and we have had our challenges along the way.
Our hopes for the future
It was a huge shock to find out Luca’s genes were so rare, especially after the shock of the diagnosis. We were disappointed and upset that Luca cannot receive any modulators but have been given lots of hope for future treatments from our CF team and research funded by the Trust.
We hope with how the research is going; there will be a treatment that Luca will be eligible for soon.
For those who can’t currently benefit from modulators or those who are unable to take them due to side effects, it is really important we continue to fund research so that everyone with CF has the opportunity for a long, happy and healthy life.
Our hope for Luca’s future is that he is happy and able to enjoy life to the fullest and experience the world and all the opportunities he wants.
Our team introduced us to the Trust at diagnosis, and we have learnt so much. It has also given us a point to guide family and friends for information.
To anybody thinking of fundraising for Cystic Fibrosis Trust, I would say it is an amazing charity which is so supportive. They create a huge awareness around CF, providing information and support to those living with CF and their friends and family. They are constantly striving to research for the CF community.
Taking on the London Marathon
This month I will be taking on the London Marathon to raise vital funds for the Trust.
Luca has to face challenges frequently throughout his life, and I wanted to complete a challenge for him while also supporting a charity so close to our hearts. I am looking forward to the atmosphere of the day, running over that finish line and knowing I have completed it for Luca to help him and so many others living with CF.
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.
Since 1964, we've supported people with cystic fibrosis to live longer, healthier lives
- and we won’t stop until everyone can live without limits imposed by CF.
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