They ask for help to get medicines for a Cuban child with a rare disease

The Cuban political activistDiasniurka Salcedo Verdecia has asked for help to obtain medication for a child who suffers from a rare genetic disease that usually manifests itself in childhood.

The youngest is calledNeroy García Roldán and suffers fromAlagille syndrome. This condition is characterized by the inability of the liver to drain bile into the intestine, with the consequent accumulation of bile in the body, inflammation of the liver tissue and poor intestinal absorption due to the absence of bile in digestion.

According to Diasniurka, the minor urgently needs three medications.

Rifampicin, an antibiotic used to treat mycobacterial infections,ursodexcholic acid, which reduces the secretion of cholesterol that is formed in liver cells as well as the cholesterol that may be in the bile, andursodiol, which serves to dissolve gallbladder stones.

Little Neroy is admitted to the intermediate therapy room of the Matanzas pediatric hospital, in bed 21.

"You can reach the mother at number 59 24 83 59. Please, at least if you can't help with the medicine, share, remember that wanting is power," he wrote in hisFacebook.

Although this syndrome primarily affects the liver, it can cause problems in other organs such as the heart, brain, kidneys, blood vessels, eyes, face, and skeleton.

Patients with Alagille syndrome may also have distinctive facial features, such as a wide, prominent forehead, deep-set eyes, and a small, pointed chin.

More and more Cuban mothers have to turn to social networks to ask for help for their children, given the health crisis on the Island.

A few days ago, Karina Ricardo from Holguín presented the case of her three-year-old son, Álvaro Cárdenas, who suffers from a rare disease called arthrogryposis multiplex congenita (many joint contractures presented at birth), without treatment in Cuba.

She requests a humanitarian visa so thatthe child, confined to a wheelchair, can undergo surgery abroad.

Alvarito also suffers from static encephalopathy (cerebral palsy), deviation of the nasal septum, unilateral strabismus, complete cleft palate (opening in the roof of the mouth), mild mitral and aortic insufficiency (cardiopathy), deformity of the limbs with the presence of club feet, delay in psychomotor development and epilepsy, among other disorders.

"When he was born they gave him ten minutes to live and he, like a warrior, battled against death. It is painful to see that he is progressively deteriorating and deformed and that these interventions cannot be performed in his country," laments his mother.