Our girls are sick, their kidneys are failing them and there isn't a cure to repair them. Nephrotic syndrome came on suddenly and unexpected.
They are going to need dialysis, to find a donor,and have a transplant.
While we are waiting for this they will both need dialysis. Our nearest unit and specialist hospital is over two hours away. Daisy and Amber are two parts our triplets, who also have two younger brothers.
We do not have the space to allow our girls this treatment at home as our house simply isn't big enough. One option would be to buy a bigger house, nearer to a main specialist hospital so we have room at home and can all be together when they're admitted. But unfortunately, that is just not possible for us. So, we need to extend the house, possibly convert the loft, to give us the space for the treatment machines and to store all of the medical equipment and accessories.
Having the dialysis at home means that all the children would be able to carry on, an as normal as possible life. The girls having home dialysis every night. We have so many stays in hospital, miles from home each year, when they get what would be just a virus or cold for anybody else. Now we have to travel for 5 hours three times a week for dialysis. Daisy and Amber start school full time in September. They will only be able to attend twice a week. Our girls will be away from home, away from their siblings, with their mum and dad having to divide themselves to make sure all the children's needs are met, our family is torn apart.
It's heartbreaking enough that not only do we have to watch one of our children go through this but we have to go through it with two.
When we are out of hospital with one we are admitted with the other and recently don't seem to have been at home much at all.
Nothing can stop this process, or make it go away But having the space at home, and means to be able to stay together when they're in hospital would be the next best thing.