How lucky am I? I am healthy and still young(ish) and I have two perfect children. I am biased of course.

Running London Marathon is my chance to put my body through the most grullling 26 miles I care to imagine to raise money for Rose Road.

I read this mother's story and I just wanted to get my running shoes on!

"Jake is 9 years old and has a rare chromosome disorder (deletion of chromosome 1p36). This means that he needs full time 24/7 care; he is unable to walk or communicate with us and has severe epilepsy. This has many implications for our whole family, making simple things like popping to the shops hard, and everyday living becomes a challenge that has to be overcome.

 

"He attends Rosewood School, Rose Road's Playscheme and in the last 6 months he has started staying at Oaks and Acorns for short breaks. This has been the icing on the cake for our family as it means we know that from the moment he's dropped at school, through the afternoon, evening and night time at Oaks and Acorns that he is safe and happy with staff that know and understand his complex needs.

 

From 2013 Rose Road aim to raise the following:

 

▪   Residential short breaks £210,000

 

▪   Outreach & Community services £22,671

 

▪   Capital equipment £19,875

 

▪   Total £252,546

 

The £210,000 for the provision of short breaks at Rose Road reflects the growing demand for our services increases and the importance of short break provision. This figure represents the cost of providing two additional bednights for every day of the year the Bradbury Centre is open.

 

In addition to our short breaks service, we aim to raise £22,671 for our Outreach and Community Services which represents a 10% increase on the hours currently provided, mainly in new geographical areas where we know there is a high demand.

 

Outreach provides one-to-one support and activities in the home or the local community for children and young adults with severe learning difficulties, physical disabilities, and/or autism. The service is available seven days a week and includes supporting young people to attend clubs, go to the cinema, or have a night out with friends! This also gives parents a few hours respite from the challenges of caring for a severely disabled son or daughter.

 

We also have some urgent capital funding requirements, which equate to a funding requirement of £19,875. This modern, up to date equipment helps our wonderful staff and volunteers to provide the best experiences and learning for the children who use our services:

 

The most pressing need is for a number of "Acheeva learning stations" which enable us to move the children out of their chairs, position them in the optimum position for learning and help them to be fully included in classroom activities and fully participate in class life. We have a number of these beds already in the school but they are in almost constant use. They enable us to move children easily around the school and access learning whilst supported in a lying position. We will be using different areas of the school for teaching whilst building works take place and extra beds are an urgent need. Being off the floor also protects vulnerable children and allows them to be involved safely in activities.

 

 

Some of our children prefer to stay within an environment they are used to and where they feel safe. In order to bring a sensory experience to the children and young people in their bedrooms or in small groups in the communal areas we require two mobile sensory resource units. We could then use these anywhere in the building as standalone equipment. The units like the one pictured are on a wheeled trolley and just need plugging in and are then ready to use. They have adaptable switches and controls, sound systems, light tubes and we can build bespoke units to meet the needs of the children. These units cost c. £1600 each depending on the variety of equipment purchased.

In order to enhance our IT equipment we need switches that can be used to operate personal computers along with software to give access to the internet technology world for children with disabilities, the costs vary from £50 to £400 each. Accompanying software to make the most of the switches ranges from £50 - £200. This would give us the ability to replicate options explored in other settings such as school when the children are staying at Rose Road. Children and young people will then have the chance to have this experience and the ability to communicate