Rio became very ill with sickness and headaches in January 2023. After multiple visits and blood tests from the doctors all came back clear, they finally agreed to give Rio an MRI, which changed our lives forever. Rio was diagnosed with a brain tumour in June 2023, when he was 8 years old. The tumour, known as a posterior fossa tumour, was located at the back of his skull near the brain stem and cerebellum. It was the size of a large lemon.
Rio had three operations. The first operation was to relieve the pressure caused by fluid in his brain and to fit his cap (which he calls his “Harry Hat”). The second operation was the hardest—a 13-hour surgery to remove his large tumour (the worst day of mine and my husband’s life). This operation led to Rio losing movement on the right side of his body. It is important to know that posterior fossa tumours sit on the part of the brain which affects speech, mobility and balance.
We had to teach Rio how to walk, talk, eat and use his fine motor skills. (this is still happening today). We got out of hospital at the end of July. Rio’s brain was trying to learn how to naturally drain fluid again, but we could tell it was struggling as Rio had a big build-up of liquid at the back of his head. After a couple of weeks, Rio became very sick again, which meant we had to go back to hospital. This is where Rio was diagnosed with hydrocephalus and needed a VP shunt fitted—his third operation.
Rio is a very happy little boy and is diagnosed with Ataxia (a neurological condition affecting muscle movement) and Hydrocephalus. The best thing about it all is that you would never know his story just by looking at him. He plays football, goes to the gym, and hangs out with his mates- he is just amazing! He has a cool scar on the back of his head, which he loves.
As parents, we wish we knew more about the aftermath of having a tumour removed. We never knew Rio was going to lose the movement on the right side of his body, and we also did not have anyone around us to talk to. This is where Harry’s HAT came in to support us. The build-up at the back of Rio’s head was also scary and we had no clue what hydrocephalus was or what to look out for.
