A woman who spent a decade believing she couldn't have children wants to meet the makers of a miracle drug which has allowed her to start trying for a baby.
Sarah Kay, 36, was diagnosed with Cystic Fibrosis at the age of four and realised the gravity of what that meant a few years later when she googled her life expectancy at the age of 12.
The first three decades of her life were plagued with hospital visits, infections and the stark reminder that she would probably die before she turned 30.
But now Sarah, from Crewe, Cheshire, is happily married and undergoing IVF to have a baby thanks to a new drug, Kaftrio, approved for use in the UK in June 2021.
Now she is on a mission to meet scientists at Vertex - the pharmaceuticals company which created the lifechanging treatment - and thank them.
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Sarah said: “I just want to be able to tell them thank you and make them understand what this means.
"When I was 21 the topic of pregnancy came up with my doctors.
"It was very much a case of don’t get pregnant because you’re not well enough to carry a baby.
"I thought I would never have kids and I started to forget that side of my life.
"I thought I was ok with it but in hindsight I wasn't because it’s something I’ve always wanted.
"I still can’t get my head around that it is a possibility for me now."
Sarah met her now husband, Stephen, in 2016, just as she suffered a total spontaneous pneumothorax where both of her lungs collapsed.
For years she had anticipated this near death experience, after she had grown up believing that the cystic fibrosis would kill her before she turned 30.
She said: “I remember googling my life expectancy when I was about 12. At that time the average life expectancy for someone with cystic fibrosis was 27 years.
“All through my teenage years I rebelled because I just didn’t care, I wanted to live my life and have fun because I thought I’d be dead by 30."
But that attitude changed for Sarah after meeting the love of her life, and she became determined to beat the cystic fibrosis and live her life with Stephen to the full.
Trials for new drug Kaftrio were showing hugely promising results over in America after scientists had created a treatment made up of three parts which helped the body to use the protein enzyme in the proper way to rid cells of this sticky mucus.
She said: “When I met my husband everything changed, I wanted to be around for a long time.
“I started to think about cystic fibrosis and how it could stop me from having a future with him.
"I already knew he wanted children because we had been friends previously.
"I said to him if this is going to go somewhere I need to tell you something.
"I told him 'I don't think I can have children and with my health the way it is I can’t see that changing'."
Since starting on Kaftrio, Sarah has undergone two rounds of IVF but is also trying for a baby naturally.
She said: "I’m a big kid myself and so is Stephen. We love being around them and having our friends’ kids around so it would mean everything to have one of our own
"Because of this drug and where my body is at it finally feels like a possibility.
“I don’t feel like I have cystic fibrosis any more, I can’t remember the last time that I coughed.
"I just can't wait to see Stephen's face when I can finally tell him that I'm pregnant."
Following the NHS bid to secure Kaftrio for patients in the UK, health experts estimate that nine in 10 people living with Cystic Fibrosis will benefit from this life-transforming drug.
NHS chief executive Amanda Pritchard said: “Since NHS staff delivered one of the fastest rollouts of Kaftrio in the world just over a year ago, the lives of thousands of patients with cystic fibrosis have been transformed.
“Innovative treatments like Kaftrio are life-changing for patients and their families, and that is why the NHS has done all it can since we secured the deal for Kaftrio to ensure patients benefit as soon as possible."
Now Sarah is urging people to help her get the hashtag #SarahMeetsVertex trending in an effort to see her dreams become a reality.
Sarah said: “In some ways I feel so lucky to have cystic fibrosis.
“When you are in the cystic fibrosis community you meet so many beautiful people with this condition and they inspire you in so many ways with their strength.
“I have lost incredible friends along the way.
“I want to thank these scientists who have made this wonderful treatment for all the people who will come after us, who won’t have to go through what we have been through.”