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Hope has arrived in the form of a new drug for a 12-year-old bedridden boy who made the headlines recently after his maid forced her entire hand into his throat, albeit with a heavy price tag -- S$175,000.
The parents of the boy said that their son had a strong will to survive, and would not give up on finding treatment for him.
The boy was born with a form of spinal atrophy, and doctors estimated that he would only live a few months, but had miraculously beaten the odds, reports Shin Min Daily News via Lianhe Zaobao.
Unfortunately, his conditions started declining after five years.
His parents got news that the Food and Drug Administration (FDA) had approved of a new drug for victims of spinal atrophy, Spinraz (nusinerse) last year:
“We would try anything to save our kid, and have been trying to import the new drug, but so far, it has been difficult.”
They also told reporters that the most important thing to them was their son’s health and they hoped that they can extend his life through the use of said drug.
Said the boy’s mother:
“The new drug is the only treatment available, but the price is hefty.
“Every injection costs about USD125,000 (S$ 175,000), and he requires four shots a year, which totals up to about USD500,000 (S$700,000).
“To us, this is an astronomical amount.”
She added that her son’s will to live is strong, and she thinks he would not wish for them to give up treating him.
The boy’s father said that the new drug could help ‘repair damaged genes’ and help his son regain control of his muscles:
“My son can only lie on bed every day.
“he is immobile and even requires help turning over.
“Furthermore, his lungs are weak and he requires a breathing apparatus to help him take in oxygen.
“With the new drug, I believe he would be able to sit up and breathe on his own,
“That is our greatest wish.”
The worried parents also said that it has been two months since they approached a hospital specialist to assist in bringing in the medicine, but there has been little progress.