Help me fundraise to create a home dialysis room at home

Hi, my name is Sam Parker and I am setting up this fundraiser for Ben Parker my husband. Ben is in end stage kidney failure for the second time in his life and currently relies on dialysis 4-5 times per week to keep him alive. Ben has always struggled with his health having multiple health problems his whole life (chronic asthma and epilepsy). In 2018 when our daughter was only a few months old he became very unwell and soon after we were told he had kidney failure. After a year of being in and out of hospital and ending up in ICU with swelling on the brain he eventually had to start dialysis. We were then told of the extremely rare autoimmune disease Ben has which is called C3G. This disease affects around 2 in every million people and as it is so rare there is no known cure for the disease. We were lucky that Ben was then placed on the transplant list in October 2018 and he was really fortunate to receive a transplant in April 2019. He had been well for a few years following his transplant apart from some persistent chest infections due to his immune system being supressed. This was a few precious years where we could spend time as family and Ben could enjoy watching our daughter grow up. Unfortunately, as is often the case with this disease, in late 2023 Ben's kidney function began to deteriorate once again. A few months later in May 2024 he was once again facing the prospect of a life on dialysis and by this point was extremely poorly again. He missed a holiday to Cyprus for our friends wedding as he was too unwell to attend. We decided this time round we would try home dialysis to fit in better with our family life. We applied for a disabled facilities grant to turn our garage into a designated space for Ben to have his home dialysis in April 2024 and naively presumed we would be awarded some funding towards this. In the meantime we opted to put all the machines etc into our daughters bedroom as a temporary measure. In September 2024 we were hit with a blow when we were told we did not meet criteria for funding. We tried to appeal this but were unsuccessful. Our daughter has never known anything other than her Daddy always being poorly and it breaks my heart when she says things like "when Daddy gets better..." because I cannot bring myself to tell her that he never will.

Meanwhile, throughout all of this turmoil, we have both tried to keep down a job and look after our daughter. We cannot work full time due to our commitments to Ben's dialysis needs. The dialysis is around 4hrs per session 4-5 times a week and we try to do this whilst our daughter is at school to minimise the impact of her seeing Ben on dialysis. As we can only work part time we do not have the funding to pay for the garage conversion ourselves and have difficulty re-mortgaging to try and fund the project. And so, we find ourselves here reaching out to ask for any help at all to help us create a safe and sterile room for Ben to feel comfortable in doing his dialysis at home. If you have read this far then we would like to thank you. Any help at all towards our target would be greatly appreciated.