Parents care for boy bedridden for 26 years
fujairah — Twenty six-year-old Savio Dsouza has never seen a park or beach, gone to school, or heard of anything outside the four walls of his home in Khor Fakkan. A patient of severe cerebral palsy, quadriplegia, mental retardation and epilepsy, the Indian national has never developed the ability to speak or stand-up straight.
Furthermore, at the age of two, he lost his vision, making him entirely dependent on his parents Elsy Joseph and Diago Dsouza.
Diago said: “We have been living in the UAE for over 30 years. I spend all my time at home taking care of Savio.” Upon hearing visitors enter his family’s beachside apartment, Savio makes loud grunts, trying to get his father’s attention.
Born in Abu Dhabi in April 1992, Savio’s medical report, issued by the Fujairah Hospital, states that he is severely retarded both physically and mentally ‘making only sounds and unable to speak’. “He is bed-ridden with poor bladder and bowel control, requiring total dependence on his parents for all activities of daily living,” said the report.
Furthermore, he has contracture of the limbs, a condition which causes permanent shortening of a muscle or joint. Savio currently weighs 52kg, and without the help of a handler or a caretaker, the parents have devoted the last 26 years of their life into Savio’s care. They shifted from their villa to an apartment after Savio kept contracting pneumonia during his childhood years. The couple also has an older daughter who works in Dubai.
Complications right from birth
His mother, a nurse by profession, suffered complications during her pregnancy. She said: “About 15 days before my due date, I felt severe pains in my stomach. I went to the hospital but they couldn’t find any problem,” she told Khaleej Times.
Elsy said: “At the time of delivery, they announced there was foetal distress. We had a C-section for Savio, and was in critical care for almost one month and 18 days.”
Infant Savio suffered seizures three days into his birth. Desperate to get better, his parents moved to India to seek better treatment. “His head was showing severe swelling. We were told there is water retention in his brain.”
At the Holy Family Hospital in Mumbai, India, doctors said he had a blunt injury to his head and suggested the insertion of a shunt into his brain. Ever since his birth, Savio’s parents have taken him to every speciality hospital in India and the UAE in the hope he will get better. The couple sold their property in India to fund his treatment.
In 1994, the couple returned to the UAE with Savio after Elsy found another job as a nurse in Fujairah Hospital. Since then, Diago has been staying at home, caring for their son and going for small part-time jobs whenever he found time. “I do small electrical works once in a while to make ends meet,” he added. “But one of us has to be here to take care of him. Fortunately, he has never developed bed sores because we keep massaging him.”
Hope in ayurvedic treatment
The 26-year-old wakes up early in the morning and is given a wipe down and diaper change. His parents mash boiled vegetables, baby food and eggs, and then feed him in a semi-liquid state. After breakfast, he is given anti-acidity and anti-epileptic medicines, and other drugs to keep his blood levels normal. “He is also given the medicine valproate for headaches,” said Diago. Since he cannot pass stool without parents support, his parents use a suppository and wait till he has defecated.
“He loves listening to music. Since he cannot see, his sense of hearing is very sharp. He loves the birthday song and we always play religious hymns for him,” said Elsy.
Today, Savio’s parents are unemployed and are finding it very hard to provide him with care. “My former company continues to sponsor me because they know of my son’s condition,” said Diago.
“We don’t have the means to provide him with the best care anymore,” said Diago. The parents hope to take the youth for ayurvedic treatment in Kerala, after which they are looking to provide him with some physiotherapy at the Vellore Institute of Technology in Tamil Nadu.
At the time of delivery, they announced there was foetal distress. We had a C-section for Savio, and was in critical care for almost one month and 18 days.” Elsy Joseph, mother of Savio and nurse by profession
He is severely retarded both physically and mentally. He is bed-ridden with poor bladder and bowel control, requiring total dependence on his parents for all activities of daily living.”
Savio’s medical report
I do small electrical work to make ends meet. But one of us has to be here to take care of him. Fortunately, he has never developed bed sores because we keep massaging him.”
Diago Dsouza, Father of Savio