Abu Dhabi: Rawdha Al Khoury, aged four years, suffers from an inherited disorder that requires full-time medical care.
Diagnosed with Krabbe disease, she was admitted to a long-term care facility more than three years ago. The disorder, which destroys the protective coating of nerve cells, has left her in need of continuous mechanical ventilation.
“The improvements I have noticed since she started to receive long-term care are tremendous. As a mother, I worry less about her medical needs now,” Umm Rawdha told Gulf News.
All was well till Rawdha turned seven months. Then she started crying constantly and inconsolably, to the point of not even sleeping.
Her parents rushed her to intensive care, where she stayed for more than two months. She was then shifted to a facility in the United States for specialised treatment and assessment. Upon her return, she was once again housed at a public hospital for the next four months.
“Then a doctor referred us to ProVita International Medical Centre,” Umm Rawdha recounts.
At the long-term care, even the details are attended to. Rawdha loves being dressed in red. “Her hair is braided neatly, and she has her nails painted. Rawdha could not get such care at a hospital,” Umm Rawdha said.
Rawdha’s care and therapy will cost the family Dh50,000 co-payment each month, or more than half a million dirhams each year. Given that her stay is indefinite and perhaps even lifelong, Umm Rawdha has no idea how the family can cover the cost.
“We have experienced hospital stays and I can say that I do not want my daughter to have to go back to that. That said, how can we foot this bill? We have responsibilities to our other children too,” the mother said.
Still, Umm Rawdha has not yet given up.
“I have faith in God, and I trust that my government, our community and the hospital will only do what is best for my daughter,” she said.
