Marielys Pérez, a mother who tirelessly rallied thousands across Cuba in a relentless effort to save her daughter's life, has shared a poignant farewell message on social media following the passing of her young daughter, Ahitana. The little girl from Pinar del Río, who suffered from Lennox-Gastaut syndrome, touched the hearts of the entire nation between 2024 and 2026.
"Goodbye, my beloved daughter, you can't imagine the immense pain you've left in my heart. I don't know how to live without you, without your scent, your green eyes, or the sound of your monitor beeping," Marielys expressed on Facebook, a platform where she chronicled every battle her daughter faced against the disease over more than two years.
The message encapsulates the unwavering dedication of a mother who spent countless days by her daughter's side at the Pepe Portilla Pediatric Hospital in Pinar del Río: "I did everything for you, gave everything for you, always believing you would stay longer in this world with me."
Finding Consolation in Faith
Marielys also sought solace in her faith: "Where your soul will be next to our God is a wonderful place, free from pain, needles, and surrounded by many angels."
She asked her daughter to wait for her: "Wait for me always, because when my journey ends here, I'll be with you as I always was."
The Public Story of Ahitana
Ahitana's story first gained public attention in 2023 when she was hospitalized due to severe seizures, which began at just eight months old. The story gained widespread recognition in April 2024 when the young girl fell into a prolonged unconscious state, and her mother desperately sought the anticonvulsant Topiramate, unavailable in Cuban pharmacies at the time.
On May 3, 2024, Ahitana awoke after 22 days in a coma, bringing relief to those following her journey. However, her condition worsened, requiring a tracheotomy, gastrostomy, and permanent mechanical ventilation as over 70% of her neurons ceased to function due to accumulated seizure damage.
The Fight for Support
Throughout this ordeal, Marielys turned to social media for help, seeking medications, medical equipment, and financial support. In December 2024, she even sold her own hair to cover expenses. Thanks to the generosity of Cubans both on the island and abroad, the family secured a house near the hospital in March 2025.
Despite these efforts, by June 2025, they still required a solar energy system to bring Ahitana home safely, as frequent power outages in Cuba posed a threat to the operation of her ventilator. Sadly, that dream was never realized.
A Final Act of Love
Following her daughter's passing, Marielys made a touching gesture that moved the hospital staff. She donated all the accumulated medications, syringes, diapers, and gauze from three years of care to the Pepe Portilla Hospital, ensuring other children could benefit.
"My daughter no longer needs these. But I know there are other angels here who do. May they serve others as they allowed her to live with dignity," she said tearfully, as reported by the Provincial Health Directorate of Pinar del Río in a Facebook post titled "Love Transformed into Hope."
Marielys concluded her farewell message with a simple yet heart-wrenching plea: "Give me strength."
Understanding Lennox-Gastaut Syndrome and Its Impact
What is Lennox-Gastaut syndrome?
Lennox-Gastaut syndrome is a severe form of epilepsy that typically begins in childhood and is characterized by frequent seizures of multiple types and intellectual disability.
How can social media play a role in medical crises?
Social media can be a powerful tool in medical crises by helping to raise awareness, gather support, and mobilize resources and donations quickly from a broad audience.
Why was the anticonvulsant Topiramate unavailable in Cuban pharmacies?
The unavailability of Topiramate in Cuban pharmacies can be attributed to the country's ongoing economic struggles and limited access to certain pharmaceuticals, exacerbated by the U.S. embargo and internal inefficiencies.