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Marielys Pérez, the mother who for years rallied thousands of Cubans to keep her daughter alive, shared a heartbreaking farewell message on social media following the passing of little Ahitana, the girl from Pinar del Río who suffered from Lennox-Gastaut syndrome and whose story touched the hearts of all of Cuba between 2024 and 2026.
"Goodbye my little daughter, my heart, you cannot imagine the intense pain you left in my heart. I don’t know what this life will be like without you, without your smell, without your little green eyes, without hearing your monitor beep," Marielys wrote on her Facebook profile, where for more than two years she narrated every battle her daughter faced against the illness.
The message summarizes a mother's complete devotion who spent a long time with her daughter in the Pepe Portilla Pediatric Hospital in Pinar del Río: "I did everything for you, I gave everything for you, I always thought you would be in this life longer with me."
Marielys also found comfort in faith: "In the place where your soul will be next to our God, that place is wonderful, free from pain, from needles, and surrounded by many angels."
And she asked her daughter to wait for her: "Always wait for me, because when my journey here ends, I will be with you just as I always have been."
The story of Ahitana began to become public in 2023, when the girl was hospitalized after suffering severe seizures since she was eight months old.
The case became widely known in April 2024, when the little girl had been unresponsive for days and her mother was desperately requesting the anticonvulsant Topiramate, a medication that was not available in Cuban pharmacies.
On May 3, 2024, Ahitana woke up after 22 days in a state of unconsciousness, generating a wave of relief among those following the case.
But the illness continued to progress: the girl required a tracheotomy, gastrostomy, and permanent mechanical ventilation, as more than 70% of her neurons ceased to function due to the damage accumulated from the seizures.
Throughout those months, Marielys tirelessly turned to social media to obtain medications, medical equipment, and financial support.
In December 2024, she sold her own hair to cover expenses. Thanks to the solidarity of Cubans both on and off the island, the family was able to acquire a house near the hospital in March 2025.
However, in June 2025, they still needed a solar energy system to be able to take Ahitana to that home, as the frequent blackouts in Cuba jeopardized the functioning of the respirator. That dream was never realized.
After the death of the little girl, Marielys made a gesture that moved the hospital itself: she brought all the boxes of medications, syringes, diapers, and gauzes accumulated over three years of care to Pepe Portilla and donated them for other hospitalized children.
"This is no longer needed for my girl. But I know there are other angels here who do need it. May it serve them what it served her to live with dignity," she said through tears, as reported by the Provincial Health Directorate of Pinar del Río in a Facebook post titled "The love that transforms into hope."
Marielys closed her farewell message with a request that was as simple as it was devastating: "Give me plenty of strength."
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