Eighteen year old Jade has a genetic condition called Ehlers-Danlos syndrome (EDS). This basically means that her joints can spontaneously dislocate at any time, as can her retinas. This means she is in excruciating pain a lot of the time and often can’t weight bare, use her arms or hands, see properly, hear properly, talk or eat. As part of this she also has orthostatic intolerance which causes her to faint regularly (sometimes multiple times an hour). The condition also affects her urinary tract and bowels amongst other things. She regularly suffers from terrible debilitating spasms. The nature of this condition means that occasionally if she is having a good day, she can walk a few steps, but on bad days/weeks she is bedbound.
Jade has been waiting 4 years for the council/social services to make alterations to her home, to make life a bit more bearable.
In all this time, she has had no access to her house! There are 5 steps to get into the front door, which clearly cannot be managed with a wheelchair, and is too steep for a ramp. Consequently, she has to be carried from her wheelchair into the house. This is made worse by the fact that she is now 18 yrs old. Her father is still recovering from cancer (for which he has gone through operations and chemotherapy/radiotherapy during this time) or her mother (under 5ft and during this time has had her uterus prolapse due to lifting Jade) but they have to try to carry her from the drive into the house. This practical problem is further exacerbated by the fact that Jade often cannot sit up at all as she is paralysed or is having large spasms.
They cannot access the back of the house as the
side path is too narrow to get the wheelchair through.
Once inside the house, if Jade is becomes unwell, she can be stuck in a bed downstairs for days or weeks, with no privacy, no tv and no access to a bathroom. Her bed is placed in what used to be the family dining room, next to the kitchen. With no access to the bathroom, her mother must help her with the bedpan.
They do now
have a stair lift, but if she can’t sit up - due to spasms etc, she can’t use
it. When it is used she then needs to be carried from the stair lift into her
If she becomes unwell when upstairs and is unable to weight bear, there is no hoist upstairs, so she is unable to get onto a commode or into the bathroom, so often has to pass urine in the bed - extremely uncomfortable and embarrassing for her. She also feels vulnerable and isolated upstairs on her own. Neither upstairs nor downstairs is there room for her carer/parent to have a bed near her, so they often have to sit up all night to care for her.
When she is well enough to use the bathroom, the bath seat only allows her to partially get into the bath so only her legs are in the water. Being stuck upstairs is clearly a major fire risk. Additionaly, when an ambulance is called, they need more than one crew to get her downstairs and out of the house, which usually takes hours!
What the family have been trying so hard to get over the last 4 years , is easier access to the house, plus a bedroom with wet room for Jade downstairs so that she can have privacy but still be included in family life. For this they need a lift through the garage into the kitchen which would be turned into her bedroom/wet room and would then need a small extension for a kitchen.
They have been told that the maximum grant social services will provide is £30,000 although they have still not agreed to provide this. The family received a quote of £4,500 to have a lift put into the garage which included labour and foundations. However, the council say that they have to use a particular provider, who are quoting £10,000 just for the lift which is not even the right kind of lift as she will not be able to use it when she can’t sit up and this does not include labour or foundations! They also say that in order to put the extension on they would have to move 2 drains and have quoted £10,000 to do this! This means that even if they get the £30,000 grant, it is almost all used up before any building work is done.
They have been told by the occupational therapist that if they can’t do the work as specified (which will cost at least £60,000), then they won’t give them the grant at all. They claim that if the alterations are substandard and Jade gets injured/dies then they would be liable, but if they do nothing, they won’t be!
Jade aid, is hoping to raise £30,000 to assist with Jade’s living conditions. To do this we will be carrying out another street collection, but are also hoping to raise money by crowdfunding.