Published: 2019-05-22 15:15
Last Updated: 2019-05-22 18:07
A citizen has appealed to His Majesty King Abdullah II to help his child, Ameer Mohammed Shuaib, who suffers from Spinal muscular atrophy 1 (SMA 1), a disease that has no cure in Jordan.
The child is currently in the Intensive Care Unit (ICU) at Queen Rania Al Abdullah Hospital For Children, where he suffers from difficulty breathing and swallowing, to the degree that the food he may eat must be as liquid as water, otherwise, he might choke.
Ameer has a weak voice even when he cries, as his voice when he cries is similar to the voice of a newborn baby because the disease has affected his rib cage until it became very close from the two sides and prominent to the top.
Doctors also described Ameer's body as a sponge because his arteries are very thin and his tongue was also affected.
This type of atrophy affects the body of a child and scientifically cannot be resisted for more than one year and a half or two years, as the cure for this disease is only available in Germany and the United States through a drug called Spinraza, which is usually given in the spinal cord on more than one dose.
The drug is usually given by a specialist because the spinal cord is sensitive and if a drug error occurs, it may lead to paralysis or death, according to Ameer's father.