Currently Ruby is carried up and down two flights of stairs, so that she can access her bedroom and bathroom but this is becoming impossible as she grows older and inevitably heavier.
Ruby enjoys many of the same activities as her two sisters aged 7 and 2, such as having a bubble bath and playing in the garden. Ruby is currently lifted in and out of the bath, which is becoming increasingly difficult and undignified for her. She also cannot access her garden without being lifted out of the door, due to the existing step.
We hope that our build will create a downstairs bedroom and wetroom, which will be converted from our existing garage. Access to this will be through our existing kitchen and we hope to add an extension to reconfigure the kitchen and create a small but much needed utility space.
The existing downstairs flooring has been damaged beyond repair by the constant use of Ruby's wheelchair and specialist seating. We hope to replace this with level access hard flooring, meaning that she can get around independently and safely. We also hope to add underfloor heating which will ensure that all areas are adequately heated for the family, but remove the risk that radiators currently pose for Ruby.
The garden area will be made accessible and safe for Ruby by replacing the existing patio doors, with a level access threshold. The outside space will be made level and wheelchair accessible so that she is able to use the garden independently as she grows older. Safe storage of garden equipment and tools will also be added, as the garage will no longer be used for this purpose.
We are incredibly grateful and fortunate to be able to access a DFG grant of £30,000 plus a £10,000 top up grant from our local authority. Unfortunately, this is not able to meet the cost of our entire build and we are left with an estimated shortfall of around £25,000.
We would love for Ruby to be able to have a home that is not only accessible and safe for her, but a place for her to feel comfortable and relaxed in. We are designing this build with her future in mind, hoping that this will meet her needs as she grows older. Due to her rare condition, we simply don't know what the future may hold for Ruby however as her parents, we hope that others will join us in our bid to help her grow as independent and happy as she can be.
Ruby is our beautiful, happy and determined 5 year old daughter.
She was born with a large chromosome deletion (12q24.33) which for her has meant that she has numerous medical conditions, along with severe learning difficulties.
Ruby has overcome many challenges in her short life, including numerous hospital admissions, endless appointments and yet she continues to defy our expectations.
Anyone who knows Ruby would agree that she is a little lady who knows her own mind, so for her being able to access her own home independently is extremely important.