Chris and Ambrose's story: "It’s incredibly overwhelming and tough, which is part of the reason Cystic Fibrosis Trust are so important to us."

Ambrose

Ambrose is our third child. He’s got this flaming bright red hair that sits on his head like a mop. He’s very out there and super stubborn. I think his personality comes from his experience with CF – he’s just started reception and he’s not the best at following instructions and sometimes if he’s told what to do, he decides not to do it. I genuinely believe that part of that is because he gets told what to do so much with his CF and he is constantly poked and prodded that I think he reclaims some of his power by being stubborn.

But he really is such a lovable kid and super caring. I take him into school and everyone seems to know him and come up and give him hugs and call his name. I think CF has helped him develop this huge and powerful sense of self. It drives me nuts when I’m trying to get him to do something, but I think he’ll lean on that stubbornness one day when he’s doing treatments or stuck in hospital.

Ambrose’s diagnosis

Ambrose was born and everything seemed normal, we stayed in hospital for a few days and then literally right as we were checking out of hospital he threw up and it was a bit green. They were a bit concerned so they took him in under observation, and eventually sent us to Great Ormond Street Hospital because they were concerned about a bowel obstruction. We were eventually able to go home after about a week; they said it was a gut infection and they were giving him antibiotics but then I got a call from someone at the hospital who said his heel prick test results had come back and they wanted us to come in the next day.

They sat us down, and we were told in no uncertain terms that Ambrose had cystic fibrosis.

Taking Ambrose home

It was hard taking Ambrose home after his diagnosis. You have this little baby that you need to look after, and he has this condition, and you have no idea what it means. There was a girl in my daughter’s class whose family we were very close with and she had CF – she must be about seven years older than Ambrose - so we knew about it through them, though we never really spoke about it in that much depth. We were very fortunate that we had a bit of help and they pointed us towards the right resources.

It’s incredibly overwhelming and tough, which is part of the reason Cystic Fibrosis Trust are so important to us, because the first resource you’re given is information written by the Trust specifically for parents of a child with new diagnosis.

Life now

That time was hard and there are still hard times. CF is very much routine-based and for me, the word I think about when I think about CF is "relentless”. Every day the condition is affecting the body. It doesn’t mean you’re always unwell but everyday some part of your body is fighting itself. So, I think of the word relentless when I think of how we have to respond to the condition – we can’t take days off or moments off because our response needs to be just as strong as the condition is.

We have a strict routine with physio, nebulisers, drugs and monitoring Ambrose. Most days it’s fine but there are some days where we have to do an extra nebuliser or something and it can be a nuisance, but we just put on PAW Patrol and crack on. When you step back and reflect, you feel really fortunate that he’s responding so well, but it never feels like a victory because you have to wake up and be relentless again tomorrow.

Advice for other parents

If I had any advice for other parents or parents of a new diagnosis, I would just honestly say that yes, it is a lot of work. It’s going to be a lot of effort, but the effort can have an incredibly positive bearing on your child’s life and future, so once you accept that it’s a lot of effort, it is doable.

Everyone always said to us that everyone with CF is different, and I’m a lawyer, so I get giving vague answers, that’s what I do all day, but when it’s your child and it’s a diagnosis, you just want them to tell you the answer and the answer so frequently is ‘it depends’. But it makes you realise no two cases are the same and there’s some comfort in that. I would say that it’s going to be difficult but with some effort you can make significant strides.

I would also say to look to the information others have put together for you because every time something comes up and you think what does this mean or what should we do, there’s always someone that’s been through it and there’s information available. There will be moments CF will throw you curveballs and it will be unlike raising other children so there have been times we’ve reached out for help, and it’s been very valuable.

Juggling work and family life

Ambrose has had two hospital admissions, one in 2021 and one in the summer of 2022. We were admitted for minimum two weeks each time, and it’s really disruptive because you have things in the diary and pressure to attend meetings but your three-year-old is in hospital and you need and want to be there. This is partly what inspired me to start my own law firm. I was able to take back some control about the way I operated my career and the flexibility I had, though I spent two of the first six weeks of our new law firm from Great Ormond Street Hospital!

Ambrose’s siblings are phenomenal. Kids are really resilient, so they jump in and understand his treatment - if they see him picking up a piece of cheese they’ll go over and say you need Creon with that, or if they see him not doing his nebuliser correctly, they’ll go over and help him.

Hopes for the future

We’re really optimistic about the drugs in existence and ones on the horizon. I think part of our relentlessness with his treatment and routine is putting him in a position where he can be just Ambrose and not Ambrose with CF, or as close to that as we can get.

Past research, funded by our incredible supporters, has transformed the lives for many in our community. We’ve made some incredible progress. But we still have so much to do.

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