For families affected by spina bifida and hydrocephalus
Spina bifida is a condition where the spinal chord and spine does not develop properly during the early weeks of a pregnancy. This causes damage to the nervous system with symptoms including incontinence, loss of skin sensation and lower limb paralysis. Some people who have spina bifida will be life-long wheelchair users.
Around one in 1,000 babies born in the UK have spina bifida, and many of these will also have hydrocephalus.
Hydrocephalus is when there is a build up of cerebrospinal fluid on the brain. This build up of fluid creates pressure inside the skull and can cause brain damage. It can be present at birth (congenital), or be caused by injury or illness (acquired).
There are considerable emotional strains experienced by a family caring for a child with one or both of these conditions. There is no "quick fix" and the need for support is life-long. Emotional resilience is increased by better knowledge about the development and impact of these two conditions. For example, understanding what the future may hold and the level of independence the young person can hope to achieve, helps families to cope with their many physical and emotional challenges.
Roald Dahl's Marvellous Children's Charity is working in partnership with the Sussex Association for Spina Bifida and Hydrocephalus (SASBAH). The project run by SASBAH will help children and young people with these conditions in Sussex, England. It will also support their families and carers, in total around 300 people.
There are three aspects to SASBAH's project. Firstly, the organisation will undertake research to identify and understand the specific issues and concerns experienced. This research will be carried out through surveys and face-to-face interviews.
Secondly, there will be a residential family weekend for 8 to 10 families, with information and support from experts in a safe and secure environment. This weekend will also help inform the charity's knowledge and research.
Thirdly, the research and family weekend will inform the design and production of a DVD for families affected by spina bifida and hydrocephalus. The DVD will provide practical and emotional coping strategies for families.
Overall, both organisations hope that this project could be used to help other spina bifida groups, as well as families with other disabilities.