Parents of sick Emirati girl to undergo kidney donor tests

Abdul Hamid Al Neama, whose 3-year-old daughter Alia suffers from a rare and debilitating disease, will fly to Germany with his family next month to start the initial stages of the transplant process.

DUBAI // The parents of a three-year-old Emirati girl who has been on dialysis most of her life are to be tested to see if they can be kidney donors.

Abdul Hamid Al Neama, whose daughter Alia suffers from a rare and debilitating disease, will fly to Germany with his family next month for the initial stages of the transplant process.

Mr Al Neama has been looking for a donor for almost a year but the search has been unsuccessful.

“I’ve been talking to the hospitals in Iran, but they couldn’t do it because of the nationality rules,” he said.

“Each country has different rules and regulations. Also the culture in the Middle East is different, so donation is not easy.

“We couldn’t find the donors, so we are going to do the test, me and my wife. We are going to check if we can be the donors.”

Alia, who weighs a little more than 10kg, suffers from aHUS (atypical haemolytic-uraemic syndrome), which causes kidney failure and blood clotting.

When she was nine months old, she travelled to Heidelberg University in Germany for treatment.

However, a delay in having a medicine imported from the United States caused complications and she developed gangrene in both hands and legs.

Although the drug, Soliris, reversed much of the damage, she lost the tips of three of the fingers on her right hand.

The complication is almost unheard of in aHUS patients, and the findings were reported in a medical journal last year.

Alia is still being treated with the drug, along with seven other patients in Dubai. It is one of the most expensive drugs in the world, costing around Dh30,000.

Alia’s treatment is being paid for by Dubai Health Authority. Soliris is a relatively new drug but has shown signs of being able to stave off the worst effects of aHUS.

However, it cannot reverse kidney failure, so Alia will still need to undergo a transplant. In addition, she will need to continue taking the drug even after surgery, to stop the disease from recurring.

Alia has been in hospital since June under close supervision. She has been on peritoneal dialysis for most of her life, but this year she developed complications, forcing doctors to consider other options.

“Those are just problems that occur when a child is on long-term dialysis, and it’s not peculiar to her,” said her doctor, Franz Schaefer, the head of paediatric nephrology at Heidelberg University.

“Her dialysis doesn’t work well any more so she has problems getting the fluid out, so she’s fluid overloaded and hypertensive,” he said. “She also has infections.

“It’s time now for her to have a transplant. If she doesn’t have a transplant soon then she will have to go to haemodialysis, which is really not a good option for her.”

Dr Schaefer said Alia’s parents would probably make good donors. “I think they would be, either one of them,” he said.

“They were a little bit hesitant to donate their kidneys. We would love to have had the transplant done quite a while ago, so far they were searching for other options and couldn’t make up their minds.

“I hope they will finally agree and give a kidney.”