“Hannah was only four-months-old when she was diagnosed with HLH: a rare, life-threatening auto-immune disease, and she needed a bone marrow transplant to survive. She spent months in the hospital getting chemotherapy and steroids before eventually receiving a transplant from an anonymous donor. Our blood was tested initially, but parents are rarely a match. When the results came back negative they went to the register, and as far as I know 27 million names worldwide voluntarily signed up. They checked to see if anybody matched the criteria and found that only three people matched, so they looked deep in those people and then had to cross two of them off because they tested positive for a common virus. This is how our daughter’s chance of getting a donor boiled down to one German lady. My point is this; if that lady had thought that 27 million is a big enough number already and she didn’t need to register, we probably wouldn’t have been able to see our daughter growing up. There is a big misconception about becoming a donor. Being registered only means that they would take a small blood sample, work out your HLA type and put you on file. My vision for 2050, or preferably the much nearer future, is for people to come across the option to register at a regular doctor visit. It should be much, much easier to become a hero and save lives.”
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