My name is Deven. I have a partner/the children’s dad called Joshua. We have an 8-year-old called Amelia, a 6-year-old called Olivia, and a 6-month-old baby boy called Oakley.

Our daughter Olivia got diagnosed with CGD in December 2024 and my son Oakley got diagnosed at 5 days old in May 2025. My eldest Amelia doesn’t have CGD and isn’t a carrier, but she is a full match to be a donor for Olivia’s bone marrow transplant!
We first learnt about CGD after Olivia fell unwell and nobody could figure out what was wrong with her. We went back and forth to the doctors as she had been diagnosed with asthma, and her breathing was quite bad.

She had a temperature, she just really wasn’t herself at all, the doctors tried many different antibiotics, but nothing was working so we went to Southampton General Hospital, and it was the same there.

We ended up going to the Hospital three times before Olivia got admitted. The night she got admitted I was woken up around 2am by nurses and doctors as Olivia had deteriorated and couldn’t breathe by herself. We got admitted to the Pediatric High Dependency unit at the hospital and still nobody knew what was wrong with her and any medication she was on wasn’t working. It was then that we met an incredible immunology team who were later to diagnose Olivia.

Olivia was declining and she almost got put in PICU but luckily, she remained strong and was able to stay in PHDU on a bipap and then a cpap machine. It was decided Olivia was to have a bronchocospy as her chest X-Ray was really concerning. A few days after bronchocopy the immunology doctors came to us and said her sample had grown something called Aspergillous which we were clueless about.

It isn’t something that’s very common - it’s very rare for a healthy 5-year-old to have. They started Olivia on anti-fungal medications and miraculously she improved enough so we could come home just before Christmas!

The whole thing was extremely scary seeing your child in that position and knowing there’s nothing you can do to help them will forever change you and a person and how you view the world. At this time, I was around 14 weeks pregnant which put so much worry about every little thing in our heads.

We then got a call and I remember it clear as day it was December 22nd 2024 and I was walking to my midwife appointment, our doctor from the hospital had called me and told me Olivia has a genetic disorder called CGD but not to worry right now there is a cure for it down the line and we will discuss more when we see them in clinic.

I was over the moon that there was a diagnosis and hearing there was a cure, I thought it would be a simple medication to fix the issue. It wasn’t until I got home and researched about the disorder on the CGDSociety website that I actually realised what the treatment was and it was to be a bone marrow transplant - I was petrified to say the least. But I knew they had the most incredible team to help us through this. I remember me and Josh sat outside the hospital feeling like the world was collapsing around us but we remained strong for each other and for the children. We came out of it a lot stronger and more resilient.  

We got a phone call from the school at the beginning of November 2024 saying Olivia had fallen asleep in class and she was hot and bright red, so I went to pick her up and saw she wasn’t right. Olivia displayed herself as having an infection, so she had a raised temperature, she wanted to sleep constantly and went completely off her food, which isn’t like Olivia at all!

Her breathing was fast, so we took her straight to be seen and then began this journey. Prior to this Olivia had had infections before and typical child illnesses and she did everything a healthy child would do but she never got poorly so we just thought a quick trip to the doctor’s and some medication would do the trick!

We’ve received incredible care from both Southampton General Hospital and Great Ormond Street Hospital; they’ve been the most supportive of any questions we’ve had.

They’ve made this transition a lot easier, all the doctors and nurses we have seen have made Olivia feel so much better about everything. She has become so resilient, every time she has a treatment or test done she would get a prize which of course has carried on until now!

The compassion and ability these doctors and nurses have shown us has made this so much better to deal with; I couldn’t thank them enough. Living day to day with CGD has quite an impact on all of us but especially Olivia, she must take daily medications which she has become a pro at!

But there are so many extra precautions to take to keep her well which is hard to start off with, but it becomes your new reality and as challenging as it is, it’s what we must do to keep her well. There are a few things Olivia isn’t allowed to do and one of the biggest ones recently was pumpkin picking, it’s something she wanted so desperately to do but with the environmental factors that come with pumpkin picking we just weren’t able to, it’s something hard to adjust to the new way of life but we get there!

passmore family

I don’t think we would have been able to get through this without the CGD specialist nurse Helen Braggins, she is absolutely incredible anything we need she is on the other end of the phone she will email me after every appointment and clarify what happened/plans as she knows I get really overwhelmed. Anything she can help with – she will. She is such an asset to us, and I couldn’t be more grateful she is with us through this journey.

With my son Oakley he got diagnosed when he was 5 days old as we knew he had a 25% chance of having CGD, when I got the call I was obviously 5 days postpartum and I was crying my eyes out it was a lot to go through. But the way I see it now, CGD affects 8 in a million people and 2 of my children are a part of those 8, they have the P47 autosomal recessive CGD and the odds of me and there dad meeting and having one child with CGD was 1 in 250,000 let alone 2, so it’s unique in a way!

The advice I’d give parents with a newly diagnosed child is just take every day as it comes, it gets very overwhelming especially if your child was healthy before, but it gets easier and becomes your new reality. There is light at the end of the tunnel, and you’re doing the best to your ability to care for your child. Take notes at appointments so you can look back. And take care of yourself! They’re only little for a short period of time. One day they won’t need us as much and as hard as this time is it’ll make you all stronger as a family.

Olivia will be having her transplant in 6-9 months’ time and Amelia will be her donor, which in itself is special!

We hope to have a healthy future and for the transplant for both children to go well and we can get on the road to recovery. I hope CGD becomes more recognised because it’s not very well known. Spreading any awareness, we hope will help families who get this diagnosis to make them feel more grounded and less overwhelmed! I’d like to take a moment to give my appreciation to my children and my partner, the resilience and bravery they have shown throughout all of this is remarkable and I couldn’t have gotten through this if they weren’t as strong as they are, I hope for a better future for us all.