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Hi my name is Maria and Im fundraising for a beautiful boy called Dylan who has FSGS, a rare type of nephrotic syndrome which is a kidney disease. He is resistant to all treatments and there is no cure for FSGS. He cannot have a transplant because it will come straight back and the treatment is not working. Heartbreakingly, Dylan knows he is not getting any better and wishes to stop treatment in the hope he would then have a few months without his central line. However his consultant told him if they withdraw treatment he will quickly go to end stage renal failure within a few weeks. I lost my own son to FSGS and the Drs told me it's worse than childhood cancer. I had no help and this is why I want to help Dylan's family because I have been through this myself and I had no help.
Dylan has made a bucket list and would like to learn to swim and learn to ride a bike, but they need a specialist wet suit for his central line. The family are also having to travel to London every week for treatment. This is a huge strain on their lives mentally physically and financially whilst going through a daily trauma trying to support Dylan through this.
I know how much it means when at the darkest of times, there's a little light, and when you are going through all this, seeing your son make a bucket list, like Dylan's, you just want to be able to do these things with them and make memories, get them away from machines and hospitals and a little normality. It would mean the world to them, so let's all rally together as a community and do this for Dylan your support will be unforgettable.
Love to you all
Maria Holmes xxx
Organizer and beneficiary
Rachael Ravenhill
Beneficiary

