After a long battle with Hutchinson-Gilford progeria syndrome, South African Tik Tok star died at a tender age of 19. The rare condition led her ageing eight years for every year of life. The news of death was confirmed by her mother, Bea Booysen at a facebook group dedicated to Beandri on December 18.

In the statement, Bea Booysen said, “It is with deep sadness that we announce the passing of Beandri Booysen, one of South Africa’s most beloved and inspiring young women. Beandri was not only known for her vibrant personality and infectious laugh but also as the last surviving individual in South Africa living with Progeria – a rare genetic condition that causes children to age prematurely. Despite the challenges she faced Beandri radiated hope and joy. She became a symbol of awareness for Progeria and other special needs, using her unique spirit to inspire thousands of people worldwide. The Booysen family kindly requests privacy during this profoundly difficult time as they mourn the loss of their beloved Beandri. Further details regarding the memorial service will be shared in due course.”

Beandri had 269,200 followers on Tik Tok. She shared inspiring and uplifting content on her account. Some posts featured her lip syncing to pop songs in a blonde wig. There are only 200 people suffering from Progeria in the world and the last person in South Africa who succumbed to the condition.

Individuals suffering with Progeria syndrome do not live by the age of 14. However, Beandri lived beyond this expectation. A few months ago, she underwent successful open heart surgery. This induced some hope. But unfortunately, her heart stopped beating and led to the sad demise of the star. Beandri once said, “My goal is to raise awareness about other special needs individuals and show that everyone is different and unique in their own way and to give strength if I can.” That’s how she spread hope and positivity to the ones suffering from such diseases.

The Hutchinson-Gilford Progeria syndrome – All you need to know about the disease

It is a rare and fatal genetic disorder that causes children to age rapidly. Children look normal at birth, but by the age of nine months to 2 years, they begin to show ageing signs. It is caused due to a mutation in the lamin A (LMNA) gene. It produces the protein which keeps hold of nucleus in each cell. Because of the mutation, the nuclei become unstable leading to premature ageing. Signs of progeria include:

Protuberant eyes

Wrinkles on the skin

Small chin, undeveloped jaw, a thin nose with beaked tip and a small face compared to the head

Hair loss (including eyebrows and eyelashes)

Loss in body fat

Deformity in joints  

The syndrome, with Osteoporosis which results in bones becoming brittle and susceptive to fractures. The hardening of the arteries increases the risk of heart attack and stroke among the children talking their lives. No cure for progeria exists, even with regular monitoring risks are always there. As mentioned, the life expectancy in such cases is 14 years only.

Beandri has left her fans and loved ones disheartened. The loss is irreparable for her family, yet until she lived…she lived well brave and fearless. Normal, going to school and living it to the fullest. She was truly an icon who proved that despite all the hardships, each one of us has the spark within to stand tall and worthy. That a syndrome can’t stop anyone from living.