“I HAVE decided not to have the operation because of my children,” said single-mum-of-two Katy Green.
“It just wouldn’t be right to leave them.”
Katy, 28, of Saltney, has congenital erythropoietic porphyria (CEP), which has blighted her life, causing pain, stress on her organs, damage to her hands and an intense allergy to light.
In May, the Leader reported how Katy had just months to decide whether to go ahead with a bone marrow procedure that had a 70 to 80 per cent chance of curing her one-in-a-million condition.
If it succeeded, it would turn her life around, but if it failed the operation could kill her.
Two bone marrow donors were found from the national register, but as the clock ticked down to the autumn deadline, Katy, who lives with daughters Lottie, nine, and Imogen, two, decided to turn them down and release the donors to other prospective patients rather than risk the operation.
“Lottie is old enough to understand, but my youngest daughter Imy is only two,” she said.
“I’m going to put it off as long as I can.
“The only thing that would change my mind is if I get suddenly worse again. I just want to see Imy grow older before I take that step.”
Her daughters do not share Katy’s condition, which affects just one in a million people.
Katy said: “If I go for the procedure and something goes wrong, Imy just won’t understand. And even if it goes well, I’ll be in hospital for weeks and recuperating for months, which isn’t fair on her.
“Basically I’m playing with time. When the donors are released, there’s a chance they could opt out of the transplant list, or be selected as donors for another patient, but that’s a risk I’ll have to take.”
Katy’s extreme light allergy has been well recorded. She featured in a BBC documentary as a youngster and the birth of Lottie made national headlines as doctors had told her she would never be able to have children.
Describing them both as “miracle babies”, Katy wants to see them grow up before she puts her life on the line in hope of a real cure.
She said: “In 2012, I was really ill. The condition does more than just stop me going outside in the sun.
“It caused abscesses in my hands, which developed into infections in my bone.
“At one point, they cracked and pus was running out of my fingers. My organs had to work hard to fight the infection, putting a lot of pressure on my spleen. Last year was bad, but I’ve been better this year, so my hope is I can manage the condition.”
As a child, Katy was forced to wear protective clothing, including a full face-visor and hood, to stop her skin breaking into excruciatingly painful blisters in sunlight.
Even the glare from a TV screen was enough to burn her, but she is now able to go outside, as long as she wears a hat, uses factor 50 cream and stays out of strong light.
She said: “This summer was the hottest on record, so I basically spent it hiding. It hasn’t been easy. It was difficult to go anywhere unless I could take a car, so it got a bit boring sometimes, but I’d rather be bored than ill.
“I don’t want to be cocky. I think the reason I’ve been better this year is because I’ve made sure I don’t overdo it. A year ago, if I had to tidy the house my hands started aching, but I’d carry on anyway. Now I’ll leave it until the pain stops.
“I’ve had a six week course of strong antibiotics this summer to stave off the infections, but I still think it’s better to rest and do it the next day rather than push it, end up ill, and feel drained and sick for weeks.”
Due to illness in her early teens, Katy was forced to miss most classes at St David’s High School and left with two GCSEs.
Now she is making up for lost time, studying a compressed course in maths at the Northop campus of Coleg Cambria. She hopes to become a doula, a non-medical person who supports pregnant mothers or women who have just given birth.
She said: “It would be the perfect job for me. I’d have loved to have been a midwife, but I can’t, because you have to train as a nurse and my hands are too damaged to allow me to do hospital work.
“I would love to be able to work with new mothers. I think it would be a wonderful thing to do. I’m fascinated by pregnancy, but I have a lot to learn because I’ve never been in labour or given birth naturally. Both times I had a planned caesarean for safety reasons.
“I’m planning to study for my qualifications and learn to drive, so by the time Imy is in school, I can get back to work - all being well.”