A hereditary medical condition meant that before Charlene Angel-Trueman and husband Mark decided to start a family they faced an agonising choice.
Did they take-up their chance of one free cycle of genetic testing of their embryos before having them artificially implanted, knowing they would not be able to afford the £9,000 price-tag to do it for any further children?
Or did they run the risk of the 50/50 risk of their baby inheriting the faulty gene that had put Charlene so at risk of developing breast cancer that she’d opted to have a double mastectomy?
Charlene says that in the end it was a “no-brainer”. She and Mark wanted to treat all the children they may have in the same way and had little Evie naturally eight months ago.
Until she is 18, no-one will know if Evie is a carrier of the BRCA1 gene, but until then Charlene and Mark are determined to show her that even if she is, it does not have to restrict her life.
To that end, Charlene, of The Drove, Barroway Drove, will complete a one mile open water swim on June 21 to raise money for the National Hereditary Breast Cancer Helpline and the same weekend Mark is doing the Saxon Classic cycle for Prostate Cancer UK.
Charlene said: “My great aunt discovered that quite a few female members of my family had died of breast cancer and ovarian cancer and she wrote to my dad saying she thought I ought to be tested. I did a bit of research and the more I found out, the more I thought ‘I ought to look into this.’
“The gene also increases the risk of prostate cancer in males and the doctors wanted my dad to have the test first. He did and of course found out he had the gene.
“When I found out I had got the gene too, my dad felt really bad - he still does - but people pass on all sorts of faulty genes. Some have mad hair and other quirky stuff, but my dad feels really responsible.
“Having had my little girls now, I think I can understand where he’s coming from. She’s got a 50/50 chance of inheriting it and if she does, I’m going to feel pretty devastated.
“I had an 85 per cent chance of getting breast cancer and 50/50 chance of getting ovarian cancer. I was told I could have preventative surgery or be screened every year. Initially I had an MRI but found the whole process of having it done and waiting of the results so scary. I thought ‘I can’t do this every year’.
“I decided to have the mastectomy and one of the things I remember getting quite upset about was whether to keep my nipples, but when I sat down with Mark and described how I was feeling, I thought ‘why am I keeping them?’ There’s a chance cancer can start there and I wanted to get rid of all the risk I could.
“I think I’m quite a strong, determined person but it is a big decision. It is hard.
“After the operation you wake up with a sense of relief. You think ‘I don’t have to worry anymore. I just need to conclude getting the process finished and get better,’ but looking down at your chest and it being flat makes you wonder if things are going to turn out. When they took all the bandages off, I thought ‘do I want to look or not?’
“That was in June 2011 and I had inflatable implants put in at the time and replaced with permanent ones in February 2012. In December 2012 I had my nipples reconstructed and in February this year I had my nipple areola tattoos.
“It’s quite a surreal experience when you go to the hospital and they say ‘what colour nipples do you want?’ It was one of those moments in life where you think ‘is this really happening?’
“When the news about Angelina Jolie having a mastectomy because she had the BRCA1 gene came out last year, it was a mixed thing for me. On the one side it was good because it was a celebrity bringing the BRCA1 gene into the headlines. On the other hand it appeared that she had her surgery and was back attending premieres within a couple of months. It’s just not like that.
“There was also a lot of negativity from people thinking people with the gene just wanted to get a nice boob job. You just hope people don’t get the wrong idea about it.
“I’ve still got to have my ovaries removed and will be having that done once we have completed our family. They have advised me to have them out by the time I am 35 and I’m 31 now.
“One of my first questions when I discovered I had the gene, was what about children? We were told we would qualify for the PGD (preimplantation genetic diagnosis) process so that the baby didn’t inherit the mutation.
“We were originally going to go down that route but discovered we would only get one cycle and we always knew we wanted more than one child. We wouldn’t have been able to afford to pay privately for another and how could you explain to your children that you saved one form it, but couldn’t afford to save the other?
“It was a difficult decision but in the end if was a no-brainer. We thought, they never knew about this gene when I was born and now they are offering tablets to reduce someone’s chance from 80 to 40 per cent. By the time Evie and further children reach 18 when they can have genetic tests, what kind of advances will there have been?
“You always hope a magic pill will have come along to reverse the fault but if it hasn’t, Mark and I want to show Evie that if she needs a mastectomy it doesn’t have to determine what she can and cannot do. That’s why I’m doing the Great East Swim and Mark is doing the cycle.
“It might even shape her career. She could be some sort of genetic superstar and come up with a cure!”
* Sponsor Charlene at www.justgiving.com/eastswimcharlene