Freddie

Four-year-old Freddie Coton began having constant seizures when he was just two-weeks old and he was rushed into hospital. His parents Catherine and Andrew said it was a very frightening experience.

Scans showed baby Freddie had Polymicrogyria, where the brain doesn’t develop properly during pregnancy and Calcification, a condition characterised by abnormal deposits of calcium in blood vessels within the brain. He also has parts of his brain missing.

“The three issues together are a ridiculous amount of medical issues and it is only getting worse,” said Catherine. “Having the three conditions together is very rare. We have been told there are only a handful of cases worldwide.”

Freddie needs round the clock care as his epilepsy is difficult to control. The support the family has received from our charity since 2020, has been a “game changer” and Catherine and Andrew value our hospice that helps not only Freddie, but his seven-year-old sister, Lizzie.

Freddie has Global Development Delay and is visually impaired, only seeing shapes and colours. He is also non-verbal and non-mobile – a dislocated hip and issues with his wrists and thumbs add more strain.

“Rainbows gives us something to look forward to,” said Catherine. “It is a beacon of light at the end of the tunnel. Freddie loves Rainbows. He has become much more relaxed and is the best version of himself right now.

“He loves Music Therapy and massages from the Rainbows Complementary Therapists. He can’t swim in public pools but he can swim in the Hydrotherapy Pool at Rainbows, and he can swim with his sister.

“Rainbows has also been great for Lizzie. She was struggling but she has benefit from the Rainbows Sibling Services, which has included counselling, and that has made such a difference. She idolises Freddie but sometimes it is good for him to be at Rainbows and for us to have time with her as she misses out on such a lot.

“We know Freddie isn’t going to have a long life,” said Catherine. “We could have weeks, we could have years. He is susceptible to chest infections, which are very dangerous for him.

“We take each day as it comes and handle it with difficulty, we didn’t actually realise how serious his condition was until earlier this year. We now have to think quality over quantity and make the days as happy as we can. It takes too much energy to be sad.”