Sophia's Story

Sophia got diagnosed on 5th August 2022 after being poorly for a couple of months at the age of 17 months.

All the tests had come back negative until that day. My whole world came crashing down around me. The dr said she was quite rare with the way she had presented.

The next day we were blue lighted to Bristol children’s hospital to have her Hickman put in and start treatment.

We were there for 2 weeks and everything seemed to be going well. We were sent back to Exeter (RD&E) we were there for 5 days and in that time she developed lots of infections. Cold & flu which turned to pneumonia, sickness & diarrhoea and candida which is thrush in the blood stream so back to Bristol we went.

On the hour and half journey back her potassium dropped and she was in heart failure so we went straight to intensive care. She was also septic, she also stopped eating and drinking. She was in intensive care for 2 weeks and all leukaemia treatment was stopped so she could fight these infections. She also had an allergic reaction to one of the medicines. This was the most scariest times of our lives. It was touch and go.

Thankfully she got a grip of them and she was getting better. She was able to restart chemo after 6 weeks. We were then sent home after 9 weeks in total but had to go to our local hospital everyday for IV fungal medicine for 3/4 months.
Ever since then she’s been smashing it every day. She finally learnt to walk and took her first steps in August last year.

Don’t get me wrong we’ve had a few more stays at our local hospital with temps but overall she’s doing amazingly. She gets to ring the bell on sept 2nd and we couldn’t be more prouder 🩷🎗️

Thank you for this break 🙏