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Darianna Cejas, a Cuban mother residing in Largo, Florida, launched a fundraising campaign on GoFundMe last Tuesday to cover the treatment for her son Sebastián, a seven-year-old boy who has been battling a severe and refractory form of CIDP, an autoimmune disease that attacks the peripheral nerves, for four years.
The goal is to raise $40,000 to cover the cost of Rituximab, a medication that Sebastián's medical team has deemed necessary since November 2025, but which the insurance company has repeatedly denied. At the time of publication, the campaign had raised $9,956 from 113 donors.
"Over the past six months, our family has been struggling not only against this devastating illness but also against the heartbreaking reality that the treatment recommended by Sebastián's medical team is still being denied by the insurance," Darianna wrote on the campaign page.
The chronic inflammatory demyelinating polyneuropathy has progressively affected the entire body of the child. Sebastián suffers from severe generalized weakness, paralysis in the ankles, severe scoliosis, difficulty chewing and swallowing, and loss of mobility.
In images shared on social media, he is seen in a hospital bed wearing a pediatric gown and an intravenous line, but smiling; in another photo, he appears at home using a blue walker and giving a thumbs up.
Recently, the boy had to be urgently hospitalized due to the progression of his condition. The doctors administered high doses of methylprednisolone to stabilize him while the family continues to demand the approval of Rituximab.
"As a mother, watching my son lose strength while awaiting a decision from the insurance has been devastating," Darianna expressed.
Rituximab is a monoclonal antibody that reduces the B cells responsible for autoimmune attacks. In CIDP, it is not a first-line treatment—the standard options are intravenous immunoglobulin, corticosteroids, and plasmapheresis—but is reserved for refractory cases like Sebastián's.
Insurance companies in the United States often deny it, arguing that its use in pediatric CIDP is "off-label" and requiring documentation of the prior failure of conventional therapies.
It is not the first time that a Cuban mother in the United States has sought help to cover the treatment of a sick child due to the rejections from the insurance system. Similar cases have garnered significant attention within the Cuban exile community.
The campaign was shared on Facebook by several users from the Cuban community, including Iran Capote, who warned that "donations can only be made from abroad."
"Sebastián is an incredibly sweet, strong, and brave child. Even through pain and weakness, he continues to smile, fight, and show a strength beyond his years," his mother wrote. "Every donation, every time his story is shared, and every prayer means more than words can express."
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