Family seeks funds to treat teenager with genetic disorder
IPOH: The family of a teen suffering from a genetic disorder which causes progressive muscle degeneration and weakness is appealing to the public to help fund his treatment.
James Edmund Thomas, 17, who suffers from Duchenne Muscular Dystrophy, has been bedridden in a hospital here for a month after suffering from pneumonia and pulmonary oedema (accumulation of fluid in the lungs) on July 23.
James was in intensive care and required a tracheostomy (an opening through the neck) to help him breathe.
The medical cost for his treat- ment was RM130,000. His father Thomas Arokiasamy, 50, has only paid RM80,000 from his savings and with the help of friends.
The technician, who is the family’s sole breadwinner, said he had no choice but to seek funds from well-wishers.
Thomas said his son, who was in a coma at one point, was slowly recovering but could only be discharged if there was a ventilator and other medical equipment at home.
He also needs someone to monitor and manage his daily needs. This long-term treatment for James would cost the family between RM65,000 to RM70,000.
Although James had been suffer- ing from this disease since he was four, Thomas said he did not expect his son’s condition to deteriorate so quickly.
Previously, they would just visit a clinic and get medicine when he had breathing difficulties, he said.
“I did not expect him to end up like this. As parents, we are worried but we are doing whatever it takes to make sure he recovers.”
But he said they were struggling with the medical bills.
“To be honest, I cannot cope. That is why I am requesting the public to help ease our burden,” he said.
Those wishing to help James can contact Parti Sosialis Malaysia legal bureau chief K. Kunasekaran at 016-558 2644.