How our Rest and Relax grant helped Sumaiyah reset after a difficult year

Sumaiyah: Growing up with CF was really challenging because it affected so many parts of my life. I spent a lot of my childhood in and out of hospital, sometimes every eight weeks for IV antibiotics, and there were times when my lung function wasn’t great. 

CF was always something I had to think about, whether that was treatments, appointments, medication or just trying to keep well while still wanting to do the same things as everyone else.  

When Kaftrio came along, it changed so much for me. It wasn’t just about my health improving, it gave me hope and allowed me to have dreams and goals for my future that, growing up, I wasn’t always sure would be possible. 

I’m admitted to hospital much less often now and my lung function is stable, which has given me the chance to think more about what I want from life.   

Tasleem: Sumaiyah was diagnosed with CF when she was two months old. When we received the letter, I didn’t even know what it was. No one in the family had heard of it, so we had to learn about CF and understand it while also caring for Sumaiyah. 

As a new parent it's scary and daunting. Your whole world has been turned upside down, but there is support out there and you need to take that support.

Sumaiyah: As my health became more stable, university started to feel like something I could genuinely work towards. I chose children’s nursing because so much of my own childhood was shaped by hospitals, nurses and healthcare, and I wanted to turn those experiences into something positive. 

Throughout my education, one of the biggest challenges has been people not always fully understanding CF; what living with it actually involves, or what someone with CF can still achieve with the right support. Sometimes people can focus too much on the condition and underestimate what you are capable of. Ahile at other times, because treatments have improved so much, they can underestimate how much CF still affects everyday life. 

That lack of understanding has sometimes made my education much harder than it needed to be. There have been times when I have had to advocate for myself and explain my needs again and again, which can be exhausting when you are already managing a lifelong condition.

Starting university again this September at the age of 25 means my journey has taken longer than I once thought. There is some sadness in that, but I’m also really proud that I have kept going. I’m excited for a fresh start and to continue working towards becoming a children’s nurse. 

Tasleem: I’m incredibly proud of Sumaiyah. I’ve watched her face so much from such a young age, and through everything she has stayed determined and kept pushing towards the life she wants. As her mum, seeing her still believe in herself and keep going means everything to me. I’ve always believed in her, and I don’t think CF should ever stop her from achieving what she wants to achieve. 

Sumaiyah: I applied for the Rest and Relax grant during a period when I felt completely worn down by everything I had been carrying. Alongside a lot of stress around my education, I had also experienced a health setback and ended up back in hospital after almost three years without an admission or needing IV antibiotics. That was difficult emotionally as well as physically, because after such a long period of stability it felt like a reminder of how unpredictable CF can still be. 

I felt like I had spent so much time just trying to keep going that I really needed something positive to look forward to and something that would allow me to switch off for a while. The grant gave me exactly that.  

I chose to use it towards a stay in a lakeside lodge at Chester Zoo with my mum because animals have always been really grounding for me. It gave me the reset I had been needing. It was a chance to step away from appointments, stress, decisions and everything I had been carrying, and simply breathe for a little while. 

The support I received from the Trust throughout the process also meant so much. I felt listened to and understood, and they recognised how much I needed something positive after such a difficult period. I was incredibly grateful not only for the grant itself, but for the kindness and understanding that came with it.