LITTLE Charlie Kiefte spent the first 21 months of his life in hospital battling illness but now he lives happily at home with help from a dedicated team of community nurses.
Rugby boy Charlie, three, has CHARGE syndrome - meaning he has breathing and swallowing difficulties, hearing loss and balance difficulties.
He also has Omenn syndrome and was born with no immune system. A thymus transplant to treat this has been successful and he is still building up his immunity as a result.
For the first 21 months of his life Charlie was looked after in hospital but now - as his condition improves - he is supported to live at home by his family and children’s community nurses at Warwickshire County Council’s Integrated Disability Service (IDS) .
The family do so much with Charlie to help with his development which is a huge a task for mum Rachel, who also has three other young children to care for. She has learned from the nurses who help the family six nights per week when he uses oxygen and requires regular suctioning, as well as assisting with his feeding tube and helping him to walk independently.
Imagining what Charlie would say if he could, Donna Clifton and Val Redhead at IDS have put together his story about how he is cared for:
“I have lots of people come to my home to see me. These are nurses, physiotherapists, speech and language therapists, social workers, community nurses and play therapists.
“A lady called Val from IDS comes to play with me. She brings lots of toys and my favourite toy is the ball tube but I also like singing five little monkeys and what’s in the bag is fun too!
“Mummy has worked hard to teach me Makaton sign language. I use it now to communicate and Val says that I have taught her lots of new signs. With my help Val can now sign all the colours of the rainbow. I am very excited about getting my new iPad as this will help people to communicate with me.
“In January I had my first experience of going to big nursery. At first I went with Mummy for just half an hour but now I am going for two whole sessions. Now I will be doing another session just like the other children in my group.
“I have really enjoyed meeting the people who have helped me achieve my goal to go to nursery just like my brothers and sister did. I can’t wait to meet new people, make new friends and learn lots of new and exciting things.
Thank you for reading my story.”
The Integrated Disability Service provides support for children with physical disabilities, sensory impairments, complex learning difficulties and communication difficulties (which includes pupils with autism spectrum and specific language disorders).
The service promotes inclusion of disabled youngsters in mainstream settings, and offers practical help and advice to families.