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“We were told that Ollie has a rare genotype and wouldn’t be eligible for any of the current modulator treatments”: Mum Bryony shares Ollie’s story
Ollie has just turned one and is the happiest boy. He is a big people watcher, and he loves going to cafes, garden centres and shops where he can sit and watch all the people walking past.
Ollie also enjoys going on the swings at the park, and going to soft play every week, where he climbs, dives headfirst and crawls around freely, which is great physio for him! His current favourite thing to do is to stand by the living room baby gate, peek around the sofa until he is spotted, and then when Ollie’s father, Harvey, or I say, ‘I’m coming!’, he’ll laugh and try to crawl away. He does this repeatedly!
Diagnosis
When Ollie was first born, he was kept in hospital for a couple of days due to coughing up mucus and a risk of infection but was then discharged after he was given the all-clear.
However, after going home, he was eating every 90 minutes, day and night, and had very oily poo. He was diagnosed at three weeks old with cystic fibrosis following the heel prick test. The following week we were told that Ollie has a rare genotype and wouldn’t be eligible for any of the current modulator treatments.
Ollie’s daily routine
Ollie’s daily routine starts with 10 minutes of his PEP mask while he and I bounce on the yoga ball and watch cartoons. He then has milk with his probiotics and one scoop of Creon® before having breakfast with a further 3/4 scoop of Creon®. This is followed by lots of playing, crawling, and chasing until his first nap and antibiotics. His lunchtime Creon® is measured based on the fat content.
In the afternoon, he does a mixture of CF-safe sensory play like water, coloured rice, and cereal ‘sand’, and he looks at books and pictures or sings songs whilst Harvey or I pat his back and chest (percussion physio).
He then has Creon® with his late afternoon snack and then more with dinner, measured based on the fat. In the evening, he has a 2nd 10 min session of his PEP before antibiotics, paravit vitamins and Creon® with bedtime milk.
Health in his first year
Luckily Ollie has been really healthy in his first year; he’s only had one virus and only needed antibiotics once. However, Harvey and I have had mixed feelings about all the publicity around the modulator drugs because while, on the one hand, it is lovely seeing all the positive developments about it, it is also hard knowing Ollie cannot benefit from these drugs.
Looking to the future
An aspect Harvey and I have had to consider is having another child. We both carry the CF gene, so there is a worry that if we have another child, they would also have CF. We will likely go down the IVF route, but this, of course, brings its own complications. Right now, we are delighted with having Ollie and settling him into his new nursery routine.
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.
If you’re struggling with any aspect of cystic fibrosis, we’re here to help. Contact our Helpline for support, a listening ear or just someone to talk to.
