The parents of the UK’s youngest organ donor were overwhelmed to receive a letter from the Prime Minister praising their “extraordinary courage”.
Emma Lee, 32, and her husband Drew, 51, made the “amazing decision” to donate the kidneys of baby Hope just hours after she died at 74 minutes old in November last year.
They have since campaigned to implement an ‘opt out policy’ in England and Wales which means people will automatically be organ donors unless they object.
But they never expected their fight would encourage PM David Cameron to personally write to them as a show of his support.
In his letter, Mr Cameron, whose own young son Ivan died in 2009, wrote: “Allow me to extend my deepest condolences to you and your wife Emma, on Hope’s passing.
“As someone who knows how painful it is to lose a child, my thoughts and prayers are with you both during this difficult time.”
He also praised their courage in deciding to donate Hope’s organs.
“However devastating your feelings of loss, you made an amazing decision and you must gain some comfort from knowing how much good came from such a short life,” he said.
“Hope’s story, which I know was widely shared by the media and touched people across our country, will have inspired people of all ages to join the organ donor register.”
Emma and Drew, from Newmarket, Suffolk, were left heartbroken when they found out 13 weeks into the pregnancy that one of their twins, Hope, had Anencephaly, a condition which prevents the brain and skull from developing properly.
Despite this, the couple, decided to continue with the pregnancy and donate her organs when the time came – something which is particularly rare in someone so young.
Little Hope, who was born in November along with her brother Josh, gave her kidneys to an adult and was also able to donate liver cells to treat patients waiting for a liver transplant.
Drew, who is now cared for by Emma after he was in a nasty motorbike crash in 2009, but was stunned when a letter dropped through their door marked “The Prime Minister, 10 Downing Street.
He said: “It was a lovely letter. It was quite personal and very kind, we were quite surprised to get it as he’s a busy man.
“It could have ended up in a pile in the bin, I didn’t expect to get a reply.”
Drew, who also has a daughter Madison with wife Emma, has since emailed Mr Cameron, asking to meet him in person to discuss the potential of rolling out the ‘opt out policy’ in England.
He added: “I’m not going to sit back and do nothing.
“I feel this is my cause now. Although I can’t work I can still make a lot of noise.
“I’m going to battle for all those people who can’t get organs.”
In the last financial year, over 1,300 people either died whilst on the national waiting list or became too sick to receive a transplant.
To register, visit organdonation.nhs.uk or call 0300 123 23 23.