We are raising funds to provide Tilly with a suitable bedroom with hoist, a wetroom/bathroom and access to the rear garden.

At present Tilly's bedroom is too small for her to move around freely in her wheelchair. We use a mobile hoist to get her up and about or into her standing frame/tilt table and you can not move without knocking things over, running over my toes and pulling wires out of equipment. It’s frustrating at best and dangerous at worst. Tilly has a hospital bed and feed pump all of which need plug sockets and equipment that needs charging, all of which create an unsafe muddle. The new room would have a ceiling hoist and many more plug sockets that would get rid of a massive piece of equipment and the crisscross of electric cables all over the place.  Her window currently is high so when she’s stuck in bed she can only see the wall. In her new room the window would be at a level see can see out of. This sounds small but a simple thing like seeing the birds will make all the difference to her.

The wet room, what can I say, this will revolutionise our lives. For Tilly it will be the first proper shower she has had in nearly six years. Throughout her teens bathtime has been horrendous for Tilly. A cold, painful and undignified experience that she just has to put up with. For me, a back breaking ordeal. The notion that Tilly will be able to have a proper shower and enjoy one of life’s simple pleasures again is invaluable. She will be able to have a wash carefree and maybe even dye her hair – something every teen girl wants to do. I cannot emphasise enough just how life changing this will be.

And then the toilet – this will be a specialised disability designed toilet which Tilly will be able to use independently. Without going into detail about logistics can you imagine what a difference this will make.

Along with all the benefits the bedroom and bathroom will make to daily life, there is also a hidden benefit. At present the bedroom and bathroom are so unsuitable and dangerous that carers are unable to come in and help us. Once the house is sorted, carers can come in and help her get up and dressed in the mornings and evenings, giving Tilly yet more independence. I can go back to being a mum rather than an exhausted half mum. My back might stop hurting and I won’t feel the pain that I am letting her down by not even being able to provide basic care needs like having a proper wash.

Now the level access to the garden. At present we have a monster ramp to the back door (the wheelchair is too big to get in the front door). The work being done would allow Tilly to move around the garden freely. Tilly loves nature and growing vegetables and flowers but the garden has sadly become something other people enjoy. The new bedroom extension will have a wide door with adaptations so she can open it independently and go outside. It sounds simple and most people wouldn’t give it a second thought but to us this is probably one of the most freeing and fantastic things you could do. Since the alterations have been proposed Tilly has repeatedly told me she is most excited about being able to go outside whenever she wants to just sit in the garden and listen to the birds. Again, an unseen advantage of this is she will be able to have other friends in wheelchairs come round and they would actually be able to get in the house (something she cannot do herself at present).

Other aspects of the work required are doors widening, and a high breakfast bar type area where the wheelchair right under to be sat at a surface for snack prep or crafts.

So this is far more than bricks, far more than toilets and doors, this is dignity self-worth independence freedom and quality of life all wrapped up in bricks and mortar and a few funky gadgets.

A percentage of the build is covered by a Disabled Facilities Grant and I have raised some funds myself with help but we are still left with a shortfall.  This is where you guys come in. Please would you help us. I really don’t want to be having to ask but your help would make a real difference to our lives.