MarrowkidzWelcome to the MarrowKidz site! A big thank you to the National Lottery Community Fund - we couldn't have done this without you! Marrowkidz Families 5-11 12-16 17-25 What MarrowKidz is all about MarrowKidz will be a vibrant, interactive and dynamic area within our website aimed at our young patients, their siblings, families and friends. We've worked hard to develop this project with a small number of families and colleagues at Great Ormond Street Hospital. We've been awarded much needed funds from the National Lottery Community Fund - thank you to everyone who plays the National Lottery! Without you and the Fund we would not be able to make a start on this important project. Why do we care? One of our key objectives is the provision of everyone affected by aplastic anaemia and other rare bone marrow failures with the information, and emotional and practical support they need – when they need it, how they need it and where they need it the most. This includes children, adult patients and their loved ones. The information that is available for people diagnosed with a rare bone marrow failure, including that available in clinical treatment centres, is geared mostly towards adult patients who comprise approximately 60% of all patients diagnosed in this country every year. Our charity is the source of this information. How are children affected? It is estimated that inherited and acquired rare bone marrow failures will affect between 30-50 children and young people in the UK every year. Treatment is closely similar to that of patients suffering from cancer. Once a diagnosis is established (and even this can take a long time) treatment is lengthy, costly, extremely isolating, entails multiple blood transfusions, chemotherapy in preparation for a bone marrow transplant if a direct match bone marrow donor is found. Patients and their families may need to travel frequently and great distances to access specialist treatment that is often not available locally due to the nature of the rare disease. The level, quality and access to support currently available to a young cancer patient is not available to a child suffering from aplastic anaemia. Yet the effects of the disease can be equally devastating. The impact on young patients’ mental health is also significant. The lack of available support and information can lead to anxiety, undue worry and concern, feelingsof exclusion and may add to the already significant emotional trauma experienced by everyone affected. Young patients, whilst undergoing intensive treatment, will miss school, sometimes for an entire year. This can have an additional traumatic effect of missing out in forming those key relationships and friendships in the formative years. What we want to do We recognise that we need to reach and support many more families who may not even know that we exist and do so in the way that meets people’s needs and expectations, whilst raising awareness of the serious diseases. MarrowKidz will be an extensive piece of work and will entail: engagement with families with children suffering from aplastic anaemia and allied rare bone marrow failures - aiming for at least 30 - 50 across the UK, proportionately distributed across key age groups young patient journey mapping across key age groups – 0-3, 4-8, 9-16, 17+ - pre-diagnosis (symptoms), at diagnosis, pre-treatment, during treatment, post-treatment (including school community/ peer community) mapping of information and support toolkits needs (including mental health support) for young patients across different age groups, to include animations, interactive games, downloadable information sheets, video content (eg what does treatment involve - including a virtual tour of bone marrow transplantation unit (enabling multiple visits to alleviate anxiety as this is being reported as an ‘extremely isolating’ experience) – ultimately designed to meet the specific needs of each target age group mapping of family member and siblings’ information and support needs, including a helpline for emotional support and signposting mapping of information and support needs of young patients’ peer networks, including schools/ nurseries development of a separate support and information offer for parents of babies and toddlers suffering from aplastic anaemia development of age appropriate information and support materials, making these accessible. What if your child needs help today? If your son or daughter has been diagnosed with aplastic anaemia - we can help. We can put you in touch with other families, like yours, who have fought the disease and are willing to support you through your journey. Not only were you there for our daughter but you have helped us all too We also have some information that you can download and some informative books we can send you by post. Please get in touch - we're here to help you.