Cuban comedian Ulises Toirac has joined the campaign to save the life of Thiago Fernando López Riverón, a nine-year-old boy suffering from a degenerative disease for which there is no treatment available in Cuba. "My goal is to raise awareness of his case and share ways to help find quicker and definitive solutions. The aim is to secure a humanitarian visa so he can receive treatment in another country," Toirac stated on his Facebook page.
Ulises explained that he met Frida, the boy's mother, and learned that Thiago suffers from Duchenne muscular dystrophy, caused by a defective gene for dystrophin (a protein in the muscles), and which rapidly deteriorates. "Muscular dystrophies attack the entire body, causing devastating effects on the respiratory, skeletal, gastric, circulatory, and neurological systems... etc., as muscles are involved in nearly all bodily processes either directly or indirectly. When one process fails, it sets off a chain reaction, causing crises in other vital functions," he detailed.
"In short, it's a catastrophic condition for Thiago's health, with solutions still being studied at advanced centers worldwide through the use of stem cells, which seem to offer the most promising results. Unfortunately, this program was shut down in Cuba last February due to shortages," Toirac noted.
The comedian added that Thiago receives care at the William Soler Pediatric Hospital, which faces many shortages. He clarified that he hasn’t spoken to the doctors about the internal issues. "What I do see is a degenerative process that is rapidly advancing in this child’s body, extinguishing his life," he emphasized.
Ulises shared the bank accounts of Frida Riverón, Thiago's mother: 9227 9598 7749 9553 CUP and 9225 9598 7993 5838 MLC. The mobile number for confirmation is: +53 53388243.
On April 25, a GoFundMe account was created to raise $20,000 to save Thiago. As of the time of writing, only $1,525 has been collected.
Activist Yamilka Lafita (Lara Crofs), who started an online campaign to secure a humanitarian visa for the boy, warned that his health worsens as time passes. On May 22, Thiago had a consultation with an orthopedic specialist who concluded that he needs spinal surgery from the first vertebra to the pelvis to correct a scoliosis that's causing respiratory insufficiency by compressing a lung.
"The doctor explained that as a protocol, Thiago will be included in a schedule for September. However, he did not guarantee the surgery, as the operating rooms remain closed... there are no resources, disposable materials, or supplies," she detailed on Facebook.
Lara has explained that there should be no issues for Thiago to receive treatment in another country, as his family has documentation proving he cannot be treated in Cuba. This year, due to lack of supplies and medical staff, the stem cell program at the William Soler hospital was shut down. "He has the disease progression of a nine-year-old that typically appears at 13 or 14 years old," she noted in April.
Efforts to Save Thiago Fernando López Riverón
The following questions and answers provide further insights into the situation of Thiago Fernando López Riverón and the efforts to save his life.
What disease does Thiago Fernando López Riverón suffer from?
Thiago Fernando López Riverón suffers from Duchenne muscular dystrophy, a degenerative disease caused by a defective gene for dystrophin.
How is Ulises Toirac helping Thiago?
Ulises Toirac is raising awareness about Thiago's condition and sharing ways to help secure a humanitarian visa for him to receive treatment in another country.
Why can't Thiago be treated in Cuba?
Thiago cannot be treated in Cuba due to the lack of necessary resources, supplies, and medical staff. The stem cell program at William Soler hospital, which could have offered some hope, was shut down in February.
How can people help Thiago?
People can help by donating to the bank accounts of Thiago's mother, Frida Riverón, or contributing to the GoFundMe campaign created to raise $20,000 for his treatment.