Sonja Charters | Sam's Mum

Sam previously attended a mainstream school.

Sam has Nephrotic Syndrome, a kidney condition where he can either relapse or be in remission. When in relapse, he retains fluid which can be dangerous for him as well as making him feel unwell and tired. His daily medication has caused complications for several years, the main being that he is immunosuppressed and particularly susceptible to catching illnesses at school. These would take him longer to recover from than normal children, sometimes causing further complications and infections.

Last year, he missed a lot of lessons because his new medication was failing and he frequently relapsed. He lost so much school time, even after we tried this new drug that was meant to keep him stable for a period of time.

Having struggled for years to get school to understand the problems and supply work for us to catch up with at home, we had to look at other options.

It was a stressful time. The number of meetings, extra work and trying to source my own work for Sam was immensely tough. Sam was diagnosed at just two years old, so we’ve had this for eleven years and the majority of his school days.

Although I have given up work to be home and do lessons with Sam to help him, we are all so much more relaxed and happy now. Knowing how much of a difference it has brought about, I just wish that we had looked into this many years ago!