The dilemma that lives Sarah Bingham It is one that no parent would want to confront. The 48-year-old woman is the mother of two young men, Noah, 20 years old, and Ariel, 16, facing the same medical condition: nephronoptysis.
It is a genetic disease thate causes inflammation and scarring of the kidneys and in recent months both have seen their health deteriorate.
Both have reached the point that they need a kidney transplant. And Sarah Bingham is compatible, but not her husband, Darryl.
“I was ready to give my daughter a kidney and then my son suffered kidney failure and he also needs a kidney. Obviously, I only have one that I can donate, ”says the woman with concern.
«Kidney medical teams don’t pressure you [para tomar una decisión], because you are risking donating a kidney. You have to make that decision yourself“Explains the woman from Hexham, in the north of England.
A “exhausting and terrifying” situation
Trouble for the Bingham family came in 2016, when Ariel began to feel constantly tired.
At first her fatigue was attributed to the stress of school exams, but the tests at the Royal Victoria Infirmary hospital they discovered that he had nephronoptysis, the kidney disease.
Tests indicated that Sarah Bingham was a compatible donor for her daughter Ariel when the time came.
But in 2019, her son Noah got sick too and was diagnosed with the same condition. He is stable, but would need to gain weight to undergo a transplant.
“Obviously, as a mother, when you have two children who need kidney transplants and you were hoping to give your kidney to one, and suddenly the other needs one too, do you feel this dilemma«, dice Bingham.
Her son is “very sick” but is on dialysis regularly and is in stable condition for now.
Your daughter’s kidney function “has deteriorated the most in the last year” and she will probably need a transplant first.
The couple has another child, Casper, 12 years old, who is being examined to see if he also has the disease.
The teacher John Sayer, a kidney care specialist at Freeman Hospital in Newcastle who is treating Noah, said nephronoptysis affects about one in 100,000 people.
“There is clearly a dilemma because there is a shortage of donors for patients who need kidney transplants. But kidney failure itself is not rare, “explains the expert.
The waiting time for a transplant is three years on averageSayer says, so patients are often faced with a “tiring and terrifying” situation.
One hope for the family is that two friends of the couple, who are compatible with Noah, can be donors.
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