PWD Awareness

Since Lily’s diagnosis in December 2013, many generous family and friends have raised money for Reverse Rett. In fact, over 60k has been raised in Lily’s name. This charity donates most of its funds to research in the hope of finding treatment for the many debilitating symptoms or even a cure. People have given generously and raised money in a number of inventive ways, giving their time and energy to support the charity.

The key to this generosity has been that people want to help Lily and it is very hard to see any other way than to contribute to research that might one day help her to live an easier life. However, over the last couple of years it has become clear that having a disabled child brings with it additional financial cost as well as emotional difficulties. Lily needs a number of items that will make her life more comfortable and caring for her a little easier. Social Services provide a large number of items which are invaluable and some financial support but their contribution is limited. For example:

• Lily has been provided with a Swifty, which is a wheel chair that she is very comfortable in and is structured to prevent curvature of the spine. However, SS don’t provide a rain cover or any type of blanket suitable. The cost for a cover is £120 and made to measure blankets are £40. A basket for the Swifty to help carry the equipment that Lily needs costs £180.
• A generous friend has paid for Lily to have a bean bag chair which supports her body so that she can sit alongside the rest of the family on the sofa. This cost £800 and would not have been paid for by SS
• Kerry and Colin needed to park on their drive to make getting lily in and out of the house easier, but there was no dropped curb and this meant that frequently other cars were parked outside and therefore Lily would have to be carried along the road.. Whilst most families would make do until they were able to do it, it was a priority but SS don’t pay for this. Cost £1500 and this has now been done paid for by family
• Stand for her eyegaze so that Lily can communicate with us means we need to find approximately £1000 to buy one.
• Adaptations of the house are now necessary as it has becoming difficult for Lily to live within the current lay out. The disability grant has been denied as the external and Internal doors aren't wide enough! they have been told to sell their house, blow their equity and declare themselves as homeless, only then will they get help!
• There are many other things which Lily needs which arent provided by Social Services such as her own specialised bath and self clean toilet, a safe garden, access to the back garden and some equipment for her physiotherapy.

The cost of many specialised products is shocking but they will make a huge difference to Lily and her quality of life.

We appreciate that every family has its financial challenges but we have set this page up so that if you would like to help provide some of the specialised equipment for Lily, you can do so.

We thank you.