Parents of a critically ill 1-month-old baby girl have launched a campaign aiming to get a million extra people on the donor register. Their baby daughter, Lottie, is currently at the top of the UK’s “super transplant list” but has only a few weeks to live if no donor can be found.
Lottie, nicknamed “Chip” by her family, was born seven weeks early with a rare condition called neonatal haemochromatosis. This causes toxic levels of iron to build up in the liver before the baby is born. Lottie’s case is even more difficult than finding a regular donor as her tiny size means she needs a liver from a child, and that her parents can’t act as live donors.
“These past days have been agonising as her liver is in a very poor condition and is not going to recover,” explained Lottie’s dad Chris Bryon-Edmond. “We have the anxious wait and the machines will start bleeping with a problem. It is an unbelievable rollercoaster of emotions.”
Mum Julie explained why she and Chris wanted to make Lottie’s story public. “It may be too late for us, but if telling our story helps one other person, it will be worth it,” Julie said. “You don’t realise the importance of organ donation until you have felt it, touched it. It’s hard to deal with a death but, out of something monstrous, there can be joy for other people.”
The couple has set up a website and Twitter account, @ChipBEblog, for their campaign to up the number of donors in the country.
“Knowing that a child must die to safe our Lottie is hard,” Chris added.