Carpet. A stable electrical supply. What do they have to do with kidney disease?
They have a lot to do with helping my family cope. They might seem like little things, but they make such a difference.
I’m Pam and Christopher is my 12 year old son. Life’s not easy for Christopher. Christopher lives with autism, and he thrives on routine. He hates noise, and he hates change.
When he was 8, his life changed forever, because he was diagnosed with an autoimmune disorder called HSP. Most children get over HSP without too many problems. But not Christopher.
Christopher was one of the unlucky ones – his kidneys failed, and we were thrown straight into the world of hospitals and dialysis.
We thought everything would improve once we were told Christopher could go onto home dialysis, but things got more complicated. The electrics in our rented house were pretty dodgy, and I couldn’t be sure that his machine would stay working overnight. I was at my wits' end – would Christopher have to go back to having dialysis in hospital? The units were lovely, but he found it hard to cope with the lights, the noise and the other people.
Christopher is the centre of my world, and I just want to make him comfortable.
We’ve managed to secure a council house – I was delighted! But what I didn’t realise was that we just got the house. Nothing more. No electrical goods, and no carpets. How can we deal with Christopher’s dialysis in a house with no carpets? It’ll be cold, and noisy, and he won’t manage that.
It’s nearly Christmas, and we don’t have a lot of money. I’m Christopher’s stay at home carer, so I don’t get a wage, just carers’ allowance, which doesn’t go far. I was thinking ‘How on earth can I get our house sorted out so that Christopher can have his treatment at home? He can’t deal with the noise of his dialysis machine in an empty room’.
Kidney Care UK’s grants service exists to help parents like me through tough times. A grant for a carpet could help make Christopher’s bedroom feel like a place where he wants to spend time. Where he will be able to have his lifesaving dialysis every night. Where the carpet will reduce the ‘tsk, tsk, tsk’ of the water going through his machine from becoming what to Christopher is an unbearably loud echo.
There’s nothing we can do to make Christopher’s existing kidneys work again. Until he can get a transplant, he will need dialysis to keep him alive. I’m desperate to avoid him having to deal with the sensory overload in hospital. Treatment at home will be so much better for him – and for me.