A Cuban mother has taken to social media to plead for a humanitarian visa for her one-year-old and nine-month-old boy who suffers from spinal muscular atrophy and has a gastrostomy.
Alain Richel Ramírez Masague He has been admitted to the Intensive Care room of the Camagüey Provincial Pediatric Hospital since he was 23 days old, according to his mother on Facebook.
“Due to his illness, he constantly needs medical attention, supplies and specific specialized equipment, he has been infected countless times with intra-hospital bacteria, he had generalized organ sepsis, from which, thank God, he miraculously recovered,” he said. Yary Alains Robaina in a sense post where he asked for help.
Currently, the little one has a tracheostomy and depends on artificial ventilation equipment.
In addition, he has a gastrostomy made, a way through which he is fed and in Cuba there are no resources or cure or alternative for the disease.
“All this time that we are hospitalized, I am separated from my other 3-year-old child, who I have never been able to give him motherly love again,” added the woman who pleads for a humanitarian visa that allows her to treat her son in the United States.
In that country, treatments with Spinraza, Zolgensma, Evrysdi and therapies have had a positive impact on children with similar conditions, he indicated.
In Cuba, as another close friend of the family pointed out, there is no phenobarbital that the child requires, nor vitamins with iron (suspension), nor suction tubes.
Alain should have received his first year of life intubated in a hospital bed.
“It is sad to see his mother, with the pain and uncertainty that she carries, every so often something is missing for the child,” the post said.
His call for help joins that of other Cubans who are crying out for a solution that puts an end to their anguish with treatment outside the country.
A few days ago, one 17 year old Cuban teenager who suffers from chronic renal failure also requested a humanitarian visa to be able to undergo a transplant, because in Cuba the only thing he has done is worsen his condition.
Yednay Pupo García is being treated in the nephrology room of the Centro Habana pediatric hospital, and has been receiving three hemodialysis sessions a week for 10 months.
Some lucky ones manage to get an exit permit to receive medical attention in another country, like the Cuban boy Emmanuel Cala, who suffers from kidney diseasebut before that he had intestinal malabsorption syndrome and has received blood transfusions due to his delicate state of health.
The little boy arrived in Miami in May with a humanitarian visa granted by the United States government, where he will receive medical treatment.
