Beandri Booysen, a South African TikTok star known for her heartwarming videos and inspiring spirit, has sadly passed away at the age of 19 after living with the rare condition known as Progeria.
Her mother, Bea Booysen, confirmed the news on Wednesday, December 18, in a touching Facebook post shared in the "Beandri, Our Inspiration" group, which the family started 15 years ago.
“It is with deep sadness that we announce the passing of Beandri Booysen, one of South Africa’s most beloved and inspirational young women,” Bea wrote in the post, titled "In Loving Memory of Beandri Booysen".
Bea noted that Beandri was the last known individual in South Africa living with Progeria, officially known as Hutchinson-Gilford progeria syndrome (HGPS).
She requested privacy for the family during this difficult time and promised to provide details of Beandri’s memorial service in the coming days.
What is Progeria?
Progeria (Hutchinson-Gilford progeria syndrome) is an extraordinarily rare genetic disorder that results in rapid aging in children, the Cleveland Clinic explains.
While newborns with the condition typically appear healthy at birth, signs of premature aging begin to manifest within the first one to two years of life. As their growth rate slows, they fail to gain weight as expected, even as their cognitive development remains typical for their age.
The condition - although rare - can affect anyone. It is typically caused by a new (de novo) genetic mutation in the LMNA gene, meaning there is no prior biological family history of the disorder. The LMNA gene is responsible for the body's production of a protein called lamin A.
Instead, an abnormal version of the protein called progerin is created instead. Progerin disrupts the stability of the body's cell nuclei, making them less secure and more prone to damage over time. This cellular instability accumulates, leading to the premature aging and associated complications seen in individuals with progeria.
Children with progeria develop unique physical traits that differentiate them from their peers, including:
- Hair loss (baldness).
- Prominent eyes.
- Aged, wrinkled skin.
- A thin, beaked nose.
- Disproportionately small face compared to the size of their head.
- Loss of fat beneath the skin.
The name "progeria" is derived from the Greek word “geras", meaning “old age.” The most well-known form of the disorder is Hutchinson-Gilford Progeria Syndrome (HGPS), named after Dr. Jonathan Hutchinson and Dr. Hastings Gilford, who first described the disease in the late 19th century.
Progeria is always fatal, with the average age of death being 14.5 years. However, some individuals with the condition have lived into their early 20s. Death is most often caused by complications of severe atherosclerosis, the same type of heart disease that affects millions of aging adults, but at a significantly younger age in children with progeria.
Atherosclerosis occurs when plaque builds up within the walls of the arteries, making them stiffer and less elastic. This can lead to life-threatening complications such as heart attacks and strokes.
Although there is no cure for progeria, a drug called lonafarnib has shown promise in slowing the progression of the disease.
Progeria is exceptionally rare, occurring in approximately 1 in every 4 million live births worldwide. Currently, about 400 children and young adults around the globe are living with the condition.
As of September 2024, the Progeria Research Foundation (PRF) has identified 17 children living with HGPS in the United States, which equates to an average prevalence of approximately 1 in 20 million.
The condition is often confirmed with a genetic blood test.
Tributes Pour in for Beandri
Beandri touched the lives of many through her TikTok account, where her videos resonated with over 278,000 followers. Known for her positive outlook and resilience, her posts often received praise from fans inspired by her strength.
Following the news of her passing, a tribute video shared on TikTok quickly gained over 300,000 views by Thursday, December 19. The caption read, “WE ALREADY MISS YOU SO MUCH.”
Messages of support and condolences poured in across social media platforms.
“RIP LITTLE ANGEL WHO MADE A BIG IMPACT,” one commenter wrote. Another added, “Prayers for the family for the loss of such a precious little young lady.”
“So sad. What an inspiration she was,” someone else shared. “Fly high with the angels sweet girl.”
Earlier in the year, Beandri had undergone heart surgery on Oct. 8, as her mother shared in an emotional update thanking fans for their prayers and encouragement. Despite the challenges, Bea later revealed that Beandri’s heart had stopped, prompting an outpouring of support from their community.
Beandri Booysen’s story touched the hearts of thousands, and her legacy as a source of inspiration and hope will not be forgotten. Memorial details will be shared by the family in due course.
Our thoughts continue to go out to Booysen’s family, friends, and supporters around the world at this time.
