Spina Bifida/Hydrocephalus - ongoing local support for anybody affected by these conditions
"When you have a disabled child you feel alone". "Even though you are disabled there are lots of things you can do". We aim to support disabled children and and adults with spina bifida & hydrocephalus (SB/H) and their families/carers. We are constantly talking to our members to find out how we can support them and we organise activities with this in mind
Why the community needs usChildren and adults with SB and/or H face many challenges in their daily lives. Many people with SB need to use wheelchairs and are doubly incontinent. H can cause physical and learning disabilities and epilepsy. One 10 year old boy with SB/ H has already had 64 operations. They and their families/carers need to be given the right information and local support to allow them to get the most out of life. We try to support the whole family including brothers and sisters. Volunteers also benefit.
Our impact on the community"ASBAH events are one of the most beneficial things about ASBAH. It's a chance for families to come together, to learn, have fun, support one another. It's given my son great help in learning about his conditions. I cannot express how much the family get togethers/parties help out family. We get to talk to people who know exactly what we go through" ( a mum with a boy aged 9 with SB and H). Adults with SB/H tell us that they feel more in control of their lives due to their involvement.
We would love some volunteers to help with events and fundraising, our stay and play sessions, collections, and information sessions. No experience or qualifications are needed as training will be given. Please contact us for details. Thank you.