The purpose of Ruby’s Fund is to run an inclusive sensory centre and social café for children and young people with additional needs and disabilities, and their families, carers and friends to provide a safe stimulating environment giving individuals and groups the chance to explore and develop in an inclusive setting which is also ideal for therapy, relaxation, education and most importantly friendship and fun.
To meet the needs of local children and adults with additional needs by working along side National & Local Government policies and targets
To provide a much needed safe environment where those with additional needs can play and develop in a space designed around their needs.
To enable the client to be physically active, make positive choices and socialise with others, thus promoting physical and emotional health.
To provide clients with an environment where they will be able to make positive relationships with their peers, and learn not to bully or discriminate.
To furnish clients with the key skills needed to work effectively with each other and care for the environment that they are in.
To provide an environment where children and adults with additional needs will be encouraged to work as part of a team as well as individually.
To encourage leadership and problem solving skills in order to maximise all our client”s chances of future employment.
Ruby was born on 8th July 2007. She was a healthy weight of 8lb 11oz. Initially everything appeared to be fine with no significant problems. Ruby was our second child. The first thing we noticed about Ruby was she never really smiled. At about 6 months of age we noticed that Ruby was not reaching certain milestones. We just put this down to her being a late starter. Ruby then began making “odd movements” where she would drop her head and raise her arms. This repeated movement would go on for up to 60 minutes, and at its worst occurring 30+ times a day. We recorded this movement and took the film to show the GP. From there we were referred to Macclesfield District General Hospital to see the Paediatrician. Luckily Ruby started doing the head dropping, arm raising movements whilst the doctor was assessing her. From there we went straight to Pendlebury Childrens Hospital where Ruby under went 4 months of intensive investigations. We now know that the head dropping, arm raising movements where Infantile Spasms- a form of epilepsy. After genetic testing Ruby was diagnosed with a very rare condition called Isodicentric_15 or IDIC 15 syndrome. It means she was born with a partial duplication on chromosome 15. This isn’t inherited, it just happened. It occurs randomly during the formation of cells and there is NO cure for IDIC 15. They say no two children with the condition are exactly alike.
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