Five-year-old blogger who battled rare disease passes away

Five-year-old Brazilian social media star Alice Lima Carneiro has passed away after battling a rare aging syndrome. Along with her twin sister Eloa, she lived with a diagnosis of Hutchinson-Gilford progeria syndrome.

Alice passed away on Wednesday, September 30. The girl and her twin sister were believed to be the only twins in the world suffering from this extremely rare disease.

Alice's family announced her death via Instagram. The girls lived in the Brazilian city of Boa Vista, and their daily lives were followed by over 1 million people on social media.

Guilherme Lago, the twins' older brother and caregiver, posted an emotional video in memory of Alice.

"Alice was very strong. She fought hard, surprised us many times, and lived surrounded by love," he said.

"This is very difficult because we didn't want it to end this way. But we cannot be selfish either. I believe Alice's life and the story she shared with us touched many people. And this is not the end. Today, we are saying goodbye to her with immense love," he said.

The cause of Alice's death has not yet been disclosed.

The twins' story became widely known after Brazilian media reported on their rare disease diagnosis in 2023.

Following this, the family regularly covered the girls' daily lives on social media. Their posts featured various activities such as the twins learning to speak and walk, dancing, playing, and swimming.

Their page became not only a platform showcasing family life, but also a tool to raise awareness about rare syndromes and support other families facing similar conditions.

When the twins celebrated their last birthday this May, they were in separate places. While Eloa was undergoing treatment in the hospital, Alice was at home.

Hutchinson-Gilford progeria syndrome is an extremely rare genetic disorder that causes the body to age much faster than usual.

According to pediatric neurologist Charlotte Briglia, who treated the twins, this syndrome can accelerate the aging process by approximately seven times compared to the normal rate.

Symptoms of the disease include slowed growth, hair loss, reduced body fat and muscle mass, thinning skin, prominent veins, a high-pitched voice, and joint stiffness.

Additionally, the syndrome can affect the cardiovascular system, cause bone fragility, and lead to nutritional problems.

"The body's systems feel the effects of such an aging process. The skin is severely affected by this change, and the entire body becomes much more fragile," Dr. Briglia said.