A Little Box bringing Hope to children with arthritis
We are delighted to announce that A Little Box Of Hope, our new project to support parents when their children are first diagnosed with Juvenile Idiopathic Arthritis, is now live!
Being told that your child has a long-term health condition can be scary or daunting, and can leave you feeling isolated and alone. We have developed A Little Box Of Hope to show that children with juvenile arthritis, and their families, are not alone. Each Little Box Of Hope is packed with information, support and practical items that may be of help – all to help parents and their children through the first daunting weeks and months following a diagnosis, and to reassure them that they are not alone.
The idea behind A Little Box Of Hope came from 7 year old Abbie, who has juvenile arthritis, and her mum Sam. They wanted to give hope to other families dealing with a diagnosis of Juvenile Idiopathic Arthritis (JIA). When Abbie herself was diagnosed when she was just 1 year old, Sam felt very alone and really didn't know where to turn for help or information. Sam wanted to change this, and in the years since Abbie’s diagnosis has been thinking of ways to help newly diagnosed families. Abbie is now 7 and wanted to be part of making a positive change. Together they developed the idea of A Little Box Of Hope and joined Juvenile Arthritis Research (JAR) to make these boxes a reality.
Sam says, “We want to let families know that they are not alone with a diagnosis of JIA, and that there is support to be found from groups, charities and other families. A diagnosis of JIA is not the end of everything – there is life with JIA and hope for the future.”
This week we have launched A Little Box Of Hope from one hospital as a trial. These packs contain information and support for parents of newly diagnosed children, to help them know they are not alone and to give them some hope. They include a lovely book called 'Kipo', about a monkey with JIA written by Tsipi Egert and Ruti Vitman who kindly allowed us to translate for a UK audience and distribute here. We've even managed to get some finger-puppet monkeys to go with the boxes to make them more fun and interactive, too. Once we know how well these work, and made any changes we need to, we would love to be able to get them to every child when they are first diagnosed. This is where the kindness and generosity of our supporters and fundraisers will be crucial as it costs around £10 for A Little Box of Hope to reach a family who needs it. You can sponsor A Little Box Of Hope here.
Thank you to Sam and Abbie for such a wonderful idea, to Tsipi and Ruti for allowing us to use the Kipo story and translate it for use in A Little Box of Hope, and to the charities who have kindly supplied information for the initial boxes - CCAA, Versus Arthritis, JIA at NRAS, and Olivia's Vision.