ABU DHABI // The mother of a severely disabled teenager is pleading with health officials to send her son abroad for treatment.
Alya Al Saeedy’s son Mansour Al Menhali, 18, was admitted to Sheikh Khalifa Medical City in Abu Dhabi on October 15 because of a malfunction in his feeding tube.
A few days later and after dozens of medical tests, X-rays and scans he had a malfunctioning digestive system diagnosed and two additional tubes were inserted – one in his stomach and the other in his nose – to remove liquids and waste.
Almost three weeks later his condition has not improved and his Emirati mother wants him to be sent abroad for treatment.
“He used to at least smile, make a few noises and move his arms. Now there is no interaction at all. He’s dying and I wont be able to live with myself if I just allow that to happen. If I don’t do everything that could possibly be done to save my son,” his mother said.
Mansour and his 13-year-old brother suffer from a progressive neurological condition, metachromatic leukodystrophy (MLD), that causes severe mental and physical disabilities. Both boys are bedridden and require constant care.
Doctors at SKMC confirmed that Mansour’s MLD was not the reason for his problem. However, they have also not given a reason or solution to why Mansour is unable to digest food.
Mansour’s medical evaluation, dated October 28, stated: “Mansour’s condition was also discussed in our daily general surgery meeting and the consensus was to continue supportive measures with drip and suction and to wait for at least another one week and to repeat the contrast studies afterwards.”
In response to Mrs Al Saeedy’s request to send her son abroad for treatment, doctors have advised her to wait for further assessments and “ask for a second opinion from a peer medical facility”.
She is worried that during this time her son will die.
“His condition is getting worse every day. It’s been more than three weeks and they have done every kind of possible test. They have no cure and they are keeping him on these tubes and painkillers. Why won’t they treat him and if they can’t, then find someone who can?”
Doctors at SKMC said they could not discuss the case without permission from the hospital, and the Heath Authority Abu Dhabi declined to comment and said that information regarding eligibility to send patients abroad for treatment was available on their website.
But a doctor at a government hospital, who did not wish to be named, defended the hospital’s treatment. “This is a solid wait-and-see plan for a patient who appears to have so many issues that transporting him to another hospital overseas would seem wasteful and foolish.
“He could get worse from the flight alone. As the report says, supportive services are available in SKMC and they seem willing to involve other hospitals for second opinions.
“It still mystifies me why we still believe overseas care is better when our hospitals are top rated and contain excellent staff.”
Mrs Al Saeedy, however, is distraught. “My son cannot handle all this,” she said. “He now can keep his eyes open for a maximum of 15 minutes and then sleep all day.
“If I could afford it, I would take him abroad this instant but I don’t have the money and his treatment is not available here. Should I just leave him to die?”
Ms Al Saeedy, who lost her two-year- old daughter in 2007, said: “I’ve already lost one child, I don’t want to lose another.”
SAlNuwais@thenational.ae