Hospice is ‘beacon of light’ for parents of Freddie, 4
BOY’S LIFE-LIMITING CONDITIONS MEAN LIFE TAKEN DAY AT A TIME
PARENTS of a four-year-old boy with rare life-limiting illnesses say they are taking each day as it comes as they do not know how long he will live.
But Catherine and Andrew Coton say that discovering Rainbows Hospice for Children and Young People has been a “game changer” in helping them and Freddie’s sister, Lizzie, cope with the situation.
Freddie began having constant seizures when he was just two weeks old and he was rushed into hospital.
His parents 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.
Catherine said: “The three issues together are a ridiculous amount of medical issues and it is only getting worse. 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 Stanley Common family has received support from Rainbows Hospice, based in Loughborough, since 2020. Catherine and Andrew are keen to give something back to the place that helps not only Freddie, but his seven-year-old sister, and are supporting the hospice’s Christmas Appeal.
The conditions that Freddie has means that he has global development delay and is visually impaired, only seeing shapes and colours. He is also non-verbal and non-mobile and a dislocated hip and issues with his wrists and thumbs add more strain.
Catherine said: “Rainbows gives us something to look forward to.
“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 been great for Lizzie. She was struggling but she has benefited from the Rainbows sibling services, which has included counselling.
“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. 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.”
Rainbows cares for hundreds of families every year who have a baby, child or young person with a serious or terminal illness that means that their lives will be shorter than most.
To support Rainbows’ Christmas Appeal and help children like Freddie, contact 01509 638 049.