Dylan R.

Child, FSGS

My name is Dylan and I am five years old. In January, I started getting tired lots and my face was swollen. My local doctor thought it was allergies or sinus problems. My mummy didn’t agree, and she took me to hospital.

When I was there, they said I had Nephrotic Syndrome and that my kidneys spill protein. Steroids didn’t work for me. The doctors did a biopsy and said I have FSGS. I have a really nice nurse that always makes her feel better. She’s called Mon. Now I have been taking tacrolimus for a few months, and my kidneys are lots better! We go see the doctor all the time to have my blood taken. I don’t like it, but my friend Claire looks after me. She is the play worker on the ward.

I am not swollen anymore. Mummy always says she is very proud of me. I am very brave. I think other patients should try not to eat too much salt. Take favourite books with you to hospital too, because sometimes you have to wait for long times.