A DESPERATE mother has said a lack of equipment has left her struggling to care for the disabled child she never knew she was having.
Margaret Kague was 17 when she gave birth to her son Jordan Thuo. Margaret, now 28, said she had no idea she was having a baby until Jordan, now 11, was born two months premature on January 7, 2001.
As well as coping with the shock of having a baby, Margaret found out Jordan had hydrocephalus – water on the brain – which can lead to delayed development and growth, learning disabilities, decreased movement and poor feeding.
The mother-of-four, of Hildon Park, Durrington, had been coping but said Jordan has grown out of a lot of his equipment, leaving him in pain and her frustrated.
She said: “About seven years ago Jordan had everything. He had a comfy chair, a wheelchair, a standing frame, splints, but then he started getting bigger.”
Margaret is desperate for social services and the NHS to update the equipment Jordan relies on.
She said: “They took his comfy chair about two years ago and they’re still saying now that a new one is coming, and then they took his eating chair.”
Margaret said because Jordan has grown out of his wheelchair, it is rubbing against his body and causing red marks and bleeding. She has even refused to send him to school because she does not want him to be in pain.
She said: “They keep telling us they can’t do anything with his wheelchair because Jordan is due an operation, and they know his posture is going to change. Are we supposed to keep him in a wrong chair? It’s like they have forgotten about him. We have been waiting for this operation for two years.”
Jordan attends Palatine School in Durrington, a special needs school, and the family said although he has all the support he needs when he’s there, that is not the case at home.
Jordan’s grandmother Joyce Thuo said: “If you came into this house, apart from the hoist and the bed, you wouldn’t even know a disabled child lived here.”
Mum Margaret added: “Apart from being the doctor myself, or the chair-maker, I just feel like I can’t do anything for my son. I feel like they have given up on Jordan.”
Margaret understands her son’s condition is complex, but thinks this should be more of a reason for people involved to “pull their fingers out”. She added: “It’s becoming too much, I’m not built to deal with stuff like this.”
Social services is responsible for supplying Jordan with a chair which he can eat in. A West Sussex County Council spokesman said: “We understand Jordan’s family’s concerns and are working closely with them and partner agencies to provide the equipment that is the best for Jordan’s welfare as soon as possible. Jordan has complex needs and requires specialist bespoke equipment and this takes time to have made. This includes a bespoke ‘P Pod’ chair that is being moulded to Jordan’s needs and will be delivered within the next month.”
The Sussex Community NHS Trust said the process of making Jordan’s new wheelchair started last year. Head of children’s services Pauline Lambert said: “We always aim to give the best possible service so we are really sorry Jordan’s family are unhappy.
“Following regular assessments, we have made adjustments to Jordan’s wheelchair and at the end of 2011 we started the process to replace it. We are continuing to seek expert advice to ensure Jordan gets a wheelchair that is best suited to his needs.”