Elis Lima Carneiro, a 5-year-old social media personality who shared her life with a rare genetic condition, died on Wednesday.
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Her family announced her death through her Instagram account. Elis had more than 1.5 million Instagram followers, where her family documented her daily life, including time spent playing with toys, attending medical appointments, and being with relatives.
Elis lived with Hutchinson-Gilford Progeria Syndrome (HGPS), a rare genetic disorder that causes rapid physical aging during childhood. Her twin sister, Eloá, also has the condition. PEOPLE reported that the sisters were believed to be the only twins in the world diagnosed with HGPS.
Elis’s memorial took place Thursday at Campo da Saudade Park Cemetery.
Elis Lima Carneiro Had A Life Full Of Love
Her family also described Elis as affectionate, playful and fond of toy cars and songs such as “Old MacDonald Had a Farm” and “Baby Shark.” Her older brother, Guilherme Lago, said she brought attention to rare diseases through her public presence.
Carneiro’s family wrote, “Everyone who wishes to say goodbye to Elis, offer their solidarity to our family or accompany us on this last path will be very welcome.”
“Thank you for all the love you always had for our little one.”
The comment section is full of grieving followers and tender messages. Those who have followed her journey offer kind words of support and tender thoughts toward the family.
HGPS affects about one in four million newborns worldwide, according to the National Library of Medicine. Children with the condition generally appear healthy at birth and during early infancy before they develop signs of accelerated aging. These can include slowed growth, failure to gain weight at the expected rate, hair loss, changes in the skin, loss of body fat, and joint abnormalities.
Elis’s death brings renewed attention to a condition that affects only a small number of children worldwide. Her family’s social-media posts gave millions of followers a window into her everyday life while raising awareness of the rare disorder.