Our daughter Rosie is a lively and sociable 10-year-old girl who lives in Devon with her family. She was born with a very rare genetic syndrome, USP9X, which means she has faced a huge number of challenges in her life so far.
Rosie is a wheelchair user and is currently able to take a few steps with a walking frame. She can't talk - but has lots to say! Rosie uses Makaton sign language and her 'talker' (ipad with special software) to get her voice heard.
As she gets bigger and taller, and looking towards her teenage years, Rosie needs her bedroom to be downstairs so she can access it more independently. At the moment she needs help to get upstairs using a stairlift.
Rosie loves a bath - it really helps her relax and soothes her muscles at the end of a busy day at school, which tends to involve lots of physio and activity. However she has outgrown our family bathroom which is too small for adults to help her and we know we won't be able to lift her in and out of the bath for much longer.
So we have embarked upon a major project to create a downstairs bedroom and accessible bathroom for her in our current family living room - and to build a single storey extension at the back of our house as a new living room which will also create level access for Rosie into the back garden, which she can't currently get out to easily.
Rosie's new bedroom will have plenty of space for a growing young woman and her bathroom will have a wash and dry toilet to help increase her independence, a height-adaptable sink with taps she will be able to use herself, and - the best bit - a fully accessible bath with a seat to lift her in and out safely.
We are fortunate to have the support of our local council in funding some of the works but, even with our own savings added in, there remains around a £40,000 gap to what the whole scheme will cost. Anything we can raise towards that will be hugely appreciated.
During: The foundations have been laid and the floor is being prepared of the new extension which will provide level access into the garden
During: Building work is continuing in earnest with the foundations for our new living room being dug
During: We are now a conservatory down!
During: Building work has started! The conservatory is on its way out!
Before: We had this wheelchair ramp added 5 years ago but unfortunately Rosie is unable to use it independently due to the steep slope and sharp corner turn. There is also a step from the house into the conservatory which she is unable to wheel over . So this is being demolished and replaced with a new level access living room which will ensure Rosie can get into the garden independently and replace the current family living room which will become her downstairs bedroom and accessible bathroom
Before: This is the step from our current dining room into the conservatory (grey floor). The metal threshold was replaced 5 years ago but is still around 40mm high which is impossible for Rosie to get over in her wheelchair or walking frame. The new living room extension will be the same floor level as the house
Rosie went to the Astor Bannerman showroom to try out the perfect bath. This has a powered seat to lift her safely in and out of the bath. The seat can also attach to trolley wheels to transfer her to and from her changing bed Sullivan’s Heroes is a charity offering support and financial assistance for families raising essential funds towards vital home adaptations for a disabled child.
Registered Charity Number 1163021.
Ruth Bradley