Noah's story (May 2023)
My experience as a young person with CGD
Well, what a few years it has been for me. I honestly am not here to brag but here to finally talk about it. Let’s start at the end of 2020. Everything was going smoothly. My school grades were improving and I was on track to pass my GCSEs. I felt like I had finally started to work hard for my future dreams. Then in January 2021 I had to have my left testicle removed. This really knocked my confidence. I also said I wouldn’t play football again. I obviously wasn’t thinking straight but I finally played football again mid-February after quickly recovering. I personally didn’t think I’d be back to doing things so fast. I loved being back at school and everything was going smoothly once again until March.
I was doing so well with my football and enjoyed being back to playing the game but with only two games left out of the season I got an abscess on my bottom. Unaware at the time of this abscess, I played one last game and what a funny game it was. We lost 5-4 but it felt like a win with my Dad getting booked by the referee and me scoring a goal. A few days later I found myself in surgery, the first of many. I didn’t play for ages after that. This went on for ages and it is still going on, but we will get to know what happens soon. Anyway, I had a few more surgeries, then we got to around August and I saw my favourite doctor ever. He said he needed to talk to my mum and I, then he walked out of the room and started pacing up the corridor. That’s when I knew something was off.
He came into the room and sat me down to tell me my CGD had returned. If you don’t know what CGD is, a few bits of info: it’s bad and it makes a lot of people not work to their full potential. He then tells me I might have to have a transplant. That is still a possibility to this day, which I try not to think about.
I then went to London to see Austin and Helen, two other people I trust like they’re family for everything they do for me. They told me there’s more ways to get through this, like a blood infusion where I get a donor to pass blood to me. I am so thankful for that donor, I don’t know what they look like, their name or anything, I only know they are in America right now. I want to meet this person one day.
Then this man called Steve did a few surgeries on me. I never knew him before any of this and I was shocked at how he handled everything. He told me strength never holds back, which is good because I need that sometimes. He then told me I had to have a stoma.
This really scared me, I didn’t know how to react. I just cried in my mum’s arms like any boy would, because we all know us boys need our mums all the time. I love her to bits, even if she nags at me and tells me to do things, but if she didn’t do the nagging then I would probably be lost in this big world already.
I got admitted to hospital where I had the stoma put in. One day in hospital I went to see my brother downstairs. I walked all the way down, that’s all I could do because the stoma really made my legs not work, it took me a few tries but we got there. I saw my little brother and he was asking me what it looked like and wanted me to show him, so I did. His little face was so confused, bless him, I can’t properly explain it, I wanted to laugh but even that hurt. Then my mum and I walked back to our room and the unthinkable happened – it farted for the first time! I tried not to laugh but my mum couldn’t stop laughing, I was crying whilst laughing. We got back to my room and my dad came in. We were FaceTime-ing my grandma, and the doctor walks in and says “hello gorgeous”, then my stoma farted at the wrong time again! We were all dying of laughter, even my grandad had a laugh.
Before I got in the car to go home from the hospital, my dad handed me a Halesowen top with messages from the football team I help coach, which made me cry. When I finally got back home, they were all so happy, it was like a family reunion. The morale of the whole club, even the parents were happy I made it home.
So that’s where I am now. I’m now at college doing well and making the best of bad situations. I am about to go for my second blood infusion.
A little message to anyone going through anything right now: I can promise you things get better for you. Never give in, keeping fighting your fight, you will win. There is always hope in everything that happens, you will get through it.
I want to say thank you to everyone who is helping me get through this, I really appreciate every single one of you, I love you all.
We would like to thank Noah for volunteering his time in writing his story.
If you would also like to get involved and share your experience with CGD, please get in contact with us at firstname.lastname@example.org.
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