Dubai: Imagine your child being unable to eat or drink, suffering from a rare condition that has no cure and his or her survival is entirely dependent on hospital care.
This is the case with eight-month-old Mohammed Subhan, who has been lying on a hospital bed since his birth. Subhan has been diagnosed with a rare inherited intestinal disorder called Microvillus Inclusion Disease (MVID). He cannot consume any food or milk orally. He is surviving entirely on intravenous feeding called total parenteral nutrition (TPN).
‘A hefty cost’
“I don’t know what to do as my son will have to spend his entire life in hospital and there is no cure. He can survive as long as doctors keep feeding him through TPN. But, it involves a hefty cost, which I cannot afford,” Sabir Khan, father of the infant, told Gulf News.
Subhan was born at Aster Hospital in Mankhool, Dubai, and insurance had covered the cost of delivery and initial treatment for about 22 days. “Then, we transferred our baby to Al Jalila Children’s Specialty Hospital in Dubai, on October 15, 2019,” said Khan.
Khan, whose monthly salary is Dh5,500 only, said that he could not afford to pay the hospital bills. “I am very grateful to Al Jalila Hospital for providing uninterrupted treatment to my son to keep him alive, but this cannot continue for a lifetime,” he added.
Appeal for help
He also thanked Al Jalila Foundation for providing financial aid to continue the treatment. “We can confirm that Al Jalila Foundation did support the treatment cost of Dh250,000 for the patient, Baby of Mehwish Sabir Sabir Waseem, at the end of last year,” a spokesperson for the foundation told Gulf News in a statement.
“Now, I have nowhere to go as the hospital bill has mounted to Dh1.9 million and I have no resources to pay this hefty amount,” Khan said and appealed for help to keep his baby alive.
“I am left with no option but to take my son to Pakistan to help him survive in a hospital. However, it will cost me a further Dh275,000 for an air ambulance to take him to Pakistan. It is again an impossible task for me without any financial assistance,” the helpless father said, adding that hospital bills were increasing with every passing day and that he needed to move his son to Pakistan at the earliest.
Lack of funds
Sabir Khan, who hails from Kohat, a town in Khyber Pakhtunkhwa province of Pakistan, said his two elder children were out of school since March this year for lack of funds. Khan has an eight-year-old son and a six-year-old daughter.
“I don’t want to lose my baby even if he survives in a hospital. I am sure Allah will help us find some solution,” he said, appealing to community members and charity organisation to help him keep his son alive.
What is Microvillus Inclusion Disease (MVIDA)?
Microvillus inclusion disease (MVID) is an extremely rare inherited intestinal disorder that is typically apparent within hours or days of birth, according to health journals. The disorder is characterised by chronic and severe watery diarrhoea and insufficient absorption of necessary nutrients due to incomplete development and degeneration of surface cells of the wall of the small intestine.
Infants with MVID may have chronic diarrhoea and the malabsorption may result in severe dehydration, deficiency of necessary nutrients, a failure to grow and gain weight at the expected rate,
No effective treatment is available as the treatment of MVID is accomplished through intravenous feeding called total parenteral nutrition (TPN). However, chronic TPN carries with it high risks of infection, liver damage and other organ disorders.
Therefore, the affected child must be carefully monitored by a physician around the clock.