George is 8 years old. His sister Ava, aged 5, has severe brain damage because of a life-threatening infection which caused excessive fluid on her brain when she was born. Her condition means she requires 24 hour care. She is completely blind, has epilepsy and cannot sit or stand by herself. Along with parents Liz and Dan, they are supported by Little Havens Hospice in Essex.
George has been going to Krafty Kids at Little Havens for two years. It’s a group for the brothers and sisters of children with life-limiting conditions and mum Liz tells us about the amazing difference it has made:
“Caring for Ava can be really tough for us all and unfortunately the effect that it has had on George, an 8 year old boy, is so often over looked by people.
Going to the Krafty Kids group has been such a huge step for George as his anxieties about doing things without us have not allowed him to take part in activities for himself. He doesn’t have the confidence to attend after school clubs or to go to parties without us as he is consumed with the fear that something will happen to Ava when he is gone.
At Little Havens children’s hospice, the staff fully understand the pressures that George faces and the fears and anxieties he has. They have a magical way of working with siblings to ensure they are able to have some special time, that’s all about them, not their poorly sibling. It’s about having fun, doing crazy things, with people who totally understand his individual needs. George loved his day at the beach hut recently. He said the best bit was running along the sea front and getting soaked! He thought it was very funny that everyone got so wet, especially the grown-ups!
Krafty Kids has also been a great opportunity for George to make friends with other boys that are in similar situations. He hopes to catch up with them when we have hospice stays –that will enhance his stays too, enabling him to play with new friends and giving me and Dan a break!
George has now decided that he might like to start a dance class after school. His time away from us, with the team, has given him the confidence to try new things. We are thrilled! We want George to be doing all the things his friends do but until now he just hadn’t felt able to.
For us it’s been such a gift to see George happy and smiling after his days, full of excitement about what he’s been doing. Watching a more confident George emerging has been priceless. There is no greater sound than the sound of a child laughing and that’s what Krafty Kids has been about.”
When children are unlikely to reach adulthood, Together for Short Lives aims to make a lifetime of difference for them and their families.
Together for Short Lives is the leading UK charity that speaks for all children with life-threatening and life-limiting conditions and all those who support, love and care for them. We raise funds for children’s hospices and a range of other charities to enable them to sustain the vital work they do for children and families. We also provide resources and training so that families receive high quality care from the moment a child is diagnosed, through end of life, and for as long as they need it.
Little Havens Hospice helps families from across Essex who’ve been told their child has an life-limiting illness. For information about the care it provides visit www.littlehavens.org.uk
Click here for some information on Children’s hospice week! http://mojomums.co.uk/childrens-hospice-week/