This week, we’d like to help make life better for a little boy called Kenji.
Kenji is 8 and lives with a lot of medical conditions. He has a genetic condition called Noonan’s syndrome, which affects his growth and causes problems with his heart. He has sickle cell disease, which leaves him tired and at high risk of infections. He also has a condition in his throat which affects his ability to swallow, as well as sleep apnoea and various other issues that affect his quality of life.
It's a lot for one little boy to deal with. His school couldn’t meet his needs, so he's being home-schooled now while he waits for a SEN school to be allocated to him.
His mum, Gill, is a single parent and cares for Kenji and his big sister on her own. Day to day life for Gill is challenging, to say the least. Kenji was tube-fed fluids for a year. He is able to drink himself now but he has to be constantly watched to make sure he doesn’t choke. He’s not allowed to get cold, as can be very dangerous for his health. He also has a lot of behavioural and social problems that make it hard for anyone to visit.
Kenji gets distressed easily and often takes himself away to his bedroom. He was nominated by a support worker from a charity that helps children with life-threatening illnesses. She was visiting the family and noticed Kenji’s bedroom was very bare.
He spends a lot of time in his room and it would make a big difference for him to have a cosy space to call his own. He needs his walls painted, a new bed, wardrobe, toys and sensory lighting. We’d also like to send some gifts for his big sister and for Gill too.
*Name has been changed
