DIY SOS is in Barnstaple tonight and host Nick Knowles meets two little girls with a serious condition requiring heavy treatment every week.
During Monday (February 15) evening’s episode of the popular BBC programme, Nick and the team arrive in North Devon to create a new home for Jan, Lucy and their children – Hadley, two, Kenny, five and six-year-old triplets Lola, Daisy and Amber.
As the kids play in their garden, Nick tells viewers: “This perfect summer scene masks a tragedy – Daisy and Amber have a rare and life-threatening disorder, known as Nephrotic syndrome.”
Barnstaple couple Jan and Lucy’s story on DIY SOS
Jan and Lucy met in their 20s and tied the knot in 2007, before buying their first home five years later.
Lucy fell pregnant, carrying Lola, a singleton, and identical sisters Daisy and Amber.
Unfortunately, just a few months into the pregnancy, they realised something was wrong.
Host Nick called it the “news every parent dreads”.
Daisy and Amber’s life-threatening condition
Daisy and Amber shared a placenta, but Daisy had no visible fluid and Amber’s heart was so big it was the size of her chest.
Dad Jan says: “The whole pregnancy became, ‘Are there three heartbeats?'”
However, when they were born they seemed fine. A few years later, Lucy gave birth to son Kenneth.
The family were on holiday when Daisy fell ill, the whole of her face and body becoming swollen. Doctors diagnosed her with Nephrotic syndrome, which meant her kidneys were shutting down.
She had developed a drug-resistant form of the disease and sadly, Jan and Lucy learned shortly after that Amber also had the condition.
Things just happen every day, but it’s not until you put it all together that you realise how rubbish it is.
Lucy says: “The moment it really finally hit me, Daisy was an inpatient and I said, ‘So is she going to need a kidney transplant?’ And [the doctor] said, ‘Yes, she is’. And no one had ever said that before.”
Nick explains that at just four years old, Daisy reached final-stage renal failure – and dialysis was the only way to keep her alive.
She had to endure an eight-hour round trip to the hospital for treatment multiple times a week.
At one point, her condition dived and she got “very, very sick”, says mum Lucy, when a simple cold developed into pneumonia.
It left Daisy in a coma for two months but, thankfully, she bounced back. However, it was a “terrifying reminder”, Nick explains, of the girls’ vulnerability.
Family struggling with hospital visits
Jan says, speaking about how hard it is to cope with the girls’ hospital visits: “We’d go months without sitting sown and eating a meal together. One of us was never here… the effect that has on the other children. Lola has struggled an awful lot.”
Lucy says, fighting to speak through tears: “I think, things just happen every day. But it’s not until you put it all together that you realise how rubbish it is.”
Heartbreakingly, Jan thinks it’s having an effect on their ability to be good parents.
He says: “You want to be the best parent you can but all you are is just a shell… that’s not the father and mother you want to be…
“You want to be everything to them, but you can’t because there’s nothing left.”
DIY SOS Barnstaple family’s kids need 70 hours of treatment
The show explains that, because of their condition, both Daisy and Amber need 70 hours of blood-cleansing dialysis every week.
They could have the treatment at home, but there’s not enough room to accommodate all the equipment needed.
Daisy eventually switched to home dialysis, which made things easier for the family. However, there’s no room to treat Amber too, as they need individual beds and space for the machinery.
So Nick Knowles and the team set out to help, bringing in TV’s Laurence Llewelyn-Bowen as a designer on the project.
– The Barnstaple episode of DIY SOS: The Big Build airs on Monday (February 15) at 9pm on BBC One
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