Jazz has spina bifida. A shunt helps spinal fluid circulate between her spine and her brain because her body doesn’t do it naturally. She has had multiple surgeries for various parts of her body due to related issues, including brain surgery. She has no vein access left due to the number of needles she has had in her lifetime.

“With the medical things that I have to do every day, my plans have to be made around them. No-one really knows about my condition and if things don’t go right it’s really hard to say to someone (in the space of 15 minutes) ‘oh, I’m suddenly not feeling well enough to come’, because I don’t want to be more specific with them then I have to, ya know? That makes me anxious because I’m thinking ‘now they’re going to feel like I’m faking it or I don’t want to hang out with them’. That’s when it’s hard, when it involves other people.”

“They said when I get to this age and further, everything goes back to day one. I’m growing, I’ve had a baby, a lot of the surgeries have been in place for 26 years, it’s almost like rewinding and having everything redone. Like my leg surgery I had last year - I had had 4 tendon transfers previously, swapped from one leg to the other, then I ran out of options now that I’m older and walking round a lot more with Nyla so the tendons weren’t holding - that’s when they brought in the plate and the screws and the swapping of bone etc…”

“The only thing I get anxious about medically is the unknown. If I have a headache and I take panadol and I still have a headache, then I start overthinking and thinking ‘what if my shunt is playing up, what if it’s not working, why do I have this headache, why is it not going away’ - chances are it’s just because I have a headache!”