A Price On A Life??!!
of £175,000 goal
Raised by 504 people in 26 months
This is my gorgeous 18 year old son Benjamin (I'm sure you'll all agree he is Gorgeous)! 3 years ago our lives we turned upside when Benj was diagnosed with an extremely rare kidney disease C3GN/MPGN Type 1. Since that day Benjs health has deteriorated rapidly with all treatments failing to preserve his kidney function. In October 2015 her started peritoneal dialysis, this meant him having a permanent tube in his stomach and having home dialysis every night for 10 hours... As you can imagine this was a very tough time for him and my bright, beautiful, optimistic and full of life boy rapidly changed into a very sad, deflated boy who couldn't see the point of his life if he was attached to a machine to keep him alive! It was the hardest time we as a family had ever had to go through and as a mother I cannot express to any of enough how heart breaking it was to see my son seemly give up on life!! Unfortunately dialysis wasn't working for him and his health continued to deteriorate and finally his Renal team agreed his best chance at survival and a normal life would be kidney transplantation. In November 2015 I was able to give my son the best gift a mother could give a second chance and donated my kidney! Benjamin recovered well and his zest for life returned. Our prayers were answered. Unfortunately our happiness was short lived and with 10 weeks the rare disease had returned and was attacking his new kidney! We were devastated, Benjamin was distraught! Our renal consultant gave us new hope by informing us of a drug call Eculizumab. This would stop Benjamin's immune system from attacking his new kidney. After applying twice to the Welsh Assembly and being refused and asking ever MP, AM we could think of to help with getting us funding, we are still being told no. This leads both Benjamin, myself and my family believing that our government does in fact put a price on a life!! We still remain hopeful and will continue to push but until they say yes then we have no option but to self fund and ask for the public to donate to Benjamin! Please excuse any grammatical errors this is one of the hardest things I've ever had to write!!Thank you for reading our story ❤️
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