A dad who gave a kidney to his daughter wishes he could have done the same for her older sister.
Darren Atkinson lost four stone in three months so the transplant to Poppy, 11, could go ahead.
Now her sister Emily, 12, is entering end-stage kidney failure and needs a transplant from a stranger as her mum Jessica, 34, cannot donate.
Both girls have cystinosis, a rare disease that causes harmful crystals to form in their bodies.
Darren, 42, from Leeds, said: “It would be the best Father’s Day gift if we could find a donor for Emily.”
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He did not think twice about giving a kidney to Poppy, who has thrived since the op and is now taller and more energetic than her sister.
The sisters have been fed via tubes into their stomachs for years and wear light sensitive glasses as the crystals in their eyes have damaged their vision.
The family were told they would need kidney transplants before they were 13. Two years ago Poppy was so ill she had to spend three days a week on a dialysis machine.
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Darren said: “It was a shock that Poppy needed a transplant before Emily. I always planned to help whoever needed it first.”
Darren was a match for both girls but at 16 stone his body mass index was too high for surgery.
He dieted and lost four stone and in January last year his kidney was removed at St James’s Hospital and rushed to Poppy who was at the nearby Leeds Children’s Hospital.
Jessica said: “Within a couple of days she was eating more than she ever had and she loves chocolate now, which is amazing as she never liked it before.”
Only one in 200,000 people have cystinosis, which is incurable. It causes amino acid to build up and form crystals in the organs, muscles, and brain. The kidneys then the eyes are the first body parts to be affected.
Emily rapidly lost weight as a baby but she was not diagnosed with the genetic disease until Jessica was eight months’ pregnant with Poppy.
Jessica said: “When the test results showed she had cystinosis too, I broke down in tears. It seemed so unfair.”
She said the sisters are more like best friends. “When Poppy came home after her transplant, we didn’t tell Emily. She was so surprised she burst out crying.”
Emily now needs a transplant and Jessica cannot donate due to underlying health issues. So Emily will need a kidney from a dead person or an “altruistic” live donor.
Live donors offer the best outcomes, as the transplanted kidney often lasts longer. One third of all kidney transplants in the UK now come from living donors – about 1,000 each year.
But not everyone can find a live donor, so the organ donor register is vital for thousands of patients.
Jessica said: “We may have to wait for someone else to die before Emily gets a kidney. They’ve been through so much, we want them to be able to get on with their lives.”
- For details on living donation, the organ donor register, and ensuring your family knows your wishes, visit www.organdonation.nhs.uk.
