Bex and Parker’s story

Tell me a bit about Parker!

Parker is an absolute whirlwind. He lives life to the full and everyone who meets him adores him. I have three children, one 11, one 9, and Parker who is 2. I love all my children equally but there’s something so special about Parker. He’s a little spark in everyone's life and everyone just loves him. He’s all about fun and everyone who’s around him has fun too.

What was Parker’s diagnosis like?

Well, I had a pretty rocky pregnancy. At 12 weeks we got told that they’d seen some thickness of the neck and thought he could have down’s syndrome. There were lots of ups and downs and we got referred to St Thomas’s for heart checks and amniotic fluid tests and eventually it all came back clear.

The birth wasn’t the best either! Parker came out not breathing and they found he had mucus in his lungs and I was in intensive care for a few days after the birth too, so we both had a really rocky start to his life.

Once we got cleared to go home, we didn’t have any problems with him, and it was just life as usual with a newborn and two kids. Three weeks after we got home, we got a call from the health vistor at the Royal Brompton, and they said that something had come up on Parker’s heel prick test and they were coming over. The health visitor and a nurse from the Brompton came over and they told us the news that Parker had cystic fibrosis. To their credit, their explanation was absolutely fantastic, and they really took the time to tell us everything. I had no idea what cystic fibrosis was, I thought it was something to do with ovaries and cysts!

My husband has a massive family; he has 6 sisters and each one has about 1-7 children each so there’s about 30-40 cousins on that side. I also have a really big family but there’s absolutely no sign of anything like CF or any disability on either side.

What was it like juggling a newborn with CF and two other kids?

It was a really wild ride. It was so tough trying to figure out the balance of caring for a third child, and also fitting in his physio and medication, and having to explain to my other kids why we have to give Parker physio and medication. Trying to regulate my own emotions around that time along with trying to care for a baby was really hard as well. It was an absolute rollercoaster but I’m so lucky I have such a supportive family around me who really helped us out.

It's been a struggle to manage things like the school run and Parker’s physio and making sure I give my other children enough attention and working. I do some nightshifts for the police answering 999 calls and also do nails on the side. So, coming in from a nightshift at 4am, and then going straight into physio, breakfast, and the school run can be exhausting, but I have an amazing mum who will drop anything to help me if I need it.

How has Parker’s health been like?

It’s been a bit up and down. Lung wise he’s been brilliant, but tummy wise he’s struggled. He’s been in hospital with bowel obstructions and stomach problems quite a lot until they did a blood test and found that he has coeliac disease. It’s a nightmare if Parker has anything with gluten in it. It’s bad enough with the coeliac disease but then you add the CF into it and it’s awful.

Besides that, he’s had a few pseudomonas and bugs and infections. If anything is going round, Parker will pick it up.

He’s been on Orkambi for a while now but I don’t think it’s made much difference. He still gets bugs and the flu and he’s as salty as ever. I’ll put him down for a nap and kiss him on the head and I can feel my lips tingling from the salt.

Will Parker be able to access Kaftrio? What does that feel like?

Parker has the two common genes, so we’re hoping it’ll be approved for two-year-olds at the end of the year and he’ll be able to go on it. I have mixed feelings about Kaftrio. I know it’s been amazing for some people, but I’ve seen others on social media really suffering from side effects. Seeing such mixed stories about Kaftrio has been quite good in a way because before Parker was given Orkambi, it felt like there were only positive stories and messaging, and I haven’t been impressed by what it’s done for him.

I’m tentatively excited about Kaftrio but I feel like it’s not our answer, I feel like there’s something better on the way. It feels really positive but I’m excited to see what comes next.

Is Parker aware of his CF?

Not really, to be honest. We try and instill a good attitude in him and tell him he’s strong and a warrior but he’s too young to understand. We do ‘pat pats’ (percussion physio) on him and he doesn’t know it’s just for him. When we do it for him, he’ll then go round and do it to the whole family. It’s very sweet.

We’ll have more of a conversation with him when he’s older. But for now, he really does live life to the fullest. He’ll climb up the tallest slides and slide down and jump on the high trampolines and all that – he really has no fear, and I want to encourage that in him. I just want people to say ‘That’s Parker’ and not ‘That’s Parker, he has CF’.

Do you have any advice for other parents who have just received a new diagnosis?

Just to go through the process. You will panic and you will go through the cleaning stage and you will lock up your child and be worried about the outside world but you’ll figure out what works for you and your child. Every parent has to go through it. You get to a point where you think, I’m not going to let CF control me, I’m going to control CF. But you do just have to go through it.

You’ve been sharing Parker’s story via your Instagram @bex.cf.mumma, how has that been?

I’ve never been a massive Instagram person but after having Parker I reached out to a lot of people with CF on Instagram. I thought it was really worth speaking about and I started putting things on my Instagram about research and medications and I was reposting other people’s stories. More and more people started to say how much they loved it and how informative and interesting they found it and it made me realise that people wanted to know about this stuff. I’d have people at work asking why I hadn’t posted if it had been a while or they’d ask what the new medication Parker was on was like, or what new treatment he was on. It started to feel like such a community and I found that other mums would reach out to me too. I’m very lucky to have lots of friends and people around me but having friends who actually have a child with CF and knows exactly what we go through is amazing. It’s just been really special.

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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