Sinead with Holly’s family; her sister Kendell, stepdad Dave and mum Harlia
There are more than 10,000 people in the UK with the life-limiting genetic condition, which destroys the lungs with sticky mucus. Conservative Lee Anderson said his wife Sinead, 43, was only here thanks to a life-saving double lung transplant from a young donor. The MP for Ashfield, in Nottinghamshire, said mother-of-one Holly Moriarty, 33, had given his wife the gift of life.
The thankful couple say they now feel like an extended family to Holly’s grieving relatives.
Due to her double transplant, diabetes-sufferer Sinead is not suitable for Trikafta. But she and her husband are still fighting for others to access it.
In Parliament this week Lee, 53, urged Mr Hancock to make the game-changing pill Trikafta available as soon as possible.
And on Wednesday Matt Hancock told Lee he was “absolutely determined” to make the wonder drug available on the NHS.
Mr Hancock said: “I didn’t know my honourable friend’s wife suffers from CF. I’m absolutely determined to make this happen.
“I have been working on this even during the corona crisis and I really hope we make progress.”
And Lee agreed the Health Secretary is the right CF champion to push the Trikafta/NHS deal over the line later this year.
Sinead with her MP husband Lee Anderson
He said: “I’m absolutely positive he will deliver it.”
Lee continued: “I’m on CF forums on Facebook and my inbox is full of people who are now dead. That bothers me. “Sometimes I trawl back through messages of people I’ve had late night conversations with and they sadly are no longer with us. I’ve always said if I ever got elected I would do what I can to push this.”
Revealing his wife’s CF history to the Daily Express, he said: “Sinead was not diagnosed until aged 18. It was devastating for her being told she may not live beyond 25 or 30.
“She trained to be a teacher and taught for 10 years, yet the classroom was the worst place for her as bugs and germs can be deadly.
“Sinead declined and got worse and went on the transplant list for five years. We had five false alarms where we got down to hospital only to find the donor lungs were not suitable.” But on the sixth try, on December 19, 2016, doctors found a match – the lungs of 33-year-old mum Holly.
The model and crusading solicitor had died on December 18 after a routine operation on a broken leg at Blackburn Royal Hospital.
The Type-1 diabetic suffered a fatal heart attack in hospital, leaving behind eight-month-old son Jensen.
Her mother Harlia, sister Kendell and partner Kristian, all agreed with her organ donation wish, which saved four people – including Sinead.
Lee said: “We are close friends with Holly’s family, we go and see them often.They lost a daughter and a sister and have adopted Sinead as their own. She loves them.”
Last October US firm Vertex agreed deals with all four UK nations for access to their three current drugs – Orkambi, Symkevi and Kalydeco. EU drugs approvers are now appraising Vertex’s fourth – and best – drug Trikafta, so it can be granted a European licence.
Transplant donor Holly Moriarty
If the NHS then agree a deal with Vertex for Trikafta it could dramatically help 90 per cent of sufferers. Describing Sinead’s physical and mental battle with her new lungs Lee said: “She wakes up panicking that she is going to reject them.
“She takes incredible care of herself as she is respectful she has this gift, these lungs. She wants to make sure they are looked after out of respect to Holly.” Sinead has praised Holly’s family’s kindness, saying: “Meeting them was overwhelming. They are amazing and their daughter was an incredible person.
“She was very determined and I can feel that determination in me.
“It’s not been easy since the transplant, but I can feel that strength from Holly getting me through it.
“Her mum says we are very similar and she can see her in me, and that it gave her some peace of mind.”
Holly with her baby son Jensen
Sinead is just like our Holly, the similarities are uncanny, says donor’s mum
The family of life-saving donor Holly Moriarty said she would be proud knowing Sinead Anderson lives on, thanks to her lungs.
Holly died aged just 33, leaving behind eight month-old son Jensen after an operation for a broken leg at Blackburn Royal Hospital.
The Type-1 diabetic had collapsed at home and broke her femur, but in hospital suffered a fatal heart attack and died.
Holly’s organs helped save four people, including Sinead who had a 14-hour double lung transplant.
Now mum Harlia Givens, 62, has met Sinead several times, treats her like her own child and is amazed how eerily similar she is to Holly.
Harlia, of St Helens, Merseyside, told us: “If Holly could pick someone to have her lungs, she would have picked Sinead. They are both so similar, her height, mannerisms, the way she walked and sat down, their diabetes.
“Also the way Sinead has had to fight – she is so strong willed, just like Holly.
“Once I gave Sinead one of Holly’s coats which she never got to wear. As she put it on she did the same little twirl as Holly. It was uncanny.
“There are no words to explain meeting Sinead for the first time – I say Holly is still here but I just can’t see her.”
Harlia told how Holly developed Type-1 diabetes as a five year-old and lived a regimented lifestyle to stay healthy, like Sinead does.
The mother-of-two revealed why Holly had studied law: “She felt like the underdog fighting to get were she wanted to be and took on cases of underdogs.
“She was a people’s champion. If she walked into a room you would know she was there – she was very strong.” Holly was in a long-term relationship with solicitor and partner Kristian Garner when she gave birth to their son Jensen. But having a baby left her with low blood pressure and she kept passing out.
Tragic organ donor Holly, 33
In December 2016 she passed out in her kitchen and broke her leg. Harlia said: “She had an operation the next day and rang me to say it went well.Then that night we got a call to say she won’t make it.”
She was a registered donor and within hours Sinead and Lee Anderson were contacted.
Explaining how she and Sinead tracked each other down, Harlia said: “Sinead did a video for the NHS’s 70th birthday.
“I commented on the website ‘Wishing you a long, happy and healthy life, from your donor’s mum’. The next day I’d got a Facebook request from Lee.
“When Sinead rang she was nervous and wanted to meet.
“We met at the park and they came back to the house. My daughter and I kept staring at her chest as we knew she had Holly’s lungs.
“Sinead is a very brave young lady and has been through so much too. I feel Holly’s still alive.”