Ashanti Smith, an 18-year-old girl with a rare condition that made her age rapidly, died at her home in West Sussex, United Kingdom. Her family is currently mourning their loss, remembering a girl who never let her condition get in the way of her spirit.
Smith’s condition was Hutchinson-Gilford Progeria syndrome, a rare condition that makes a person age eight years for every one year he or she is alive. This rapid aging condition is also known as Benjamin Button syndrome, named after the movie The Curious Case of Benjamin Button where actor Brad Pitt plays a man with this aging condition.
Besides rapid aging, the syndrome is also known to cause heart problems, mobility issues and possible arthritis. For Ashanti Smith, she had a body similar to that of a 144-year-old.
Currently there is no cure for this rare condition, but scientists are working on a medicine that can add more than two years to a patient’s life. The drug, Zokinvy (Ionafarnib), was just approved by the Food and Drug Administration.
Ashanti’s mom, Phoebe Louise Smith, says that her daughter had amazing willpower despite the prognosis. “She was a typical, stroppy 18-year-old and I loved everything about her,” she said. “She was brilliant, she was gobby. She spoke her mind and everyone knew it.”
According her family, Ashanti never let her body get in the way of being a typical kid. When a broken hip prevented her from walking she refused to ride in a car and preferred to be carried or even walk despite the pain in her hip.
Before her death, Ashanti was able to properly celebrate her 18th birthday with her favorite drink – Sex on the Beach. It was her first girls’ night out with her mom and a handful of her friends. They even took pictures of her getting ID’d for the first time.
Three months after her birthday, the day started like any other. Ashanti was able to walk in the park and get KFC with her family before her health took a turn for the worse. She was brought home and passed away via heart failure surrounded by her mom, her dad, Shaine Wickens, and a family friend. The girl’s last words were “Mum, I love you. You got to let me go.”
Ashanti Smith’s family is planning an elaborate celebration of their daughter’s life. The family already released nearly 150 balloons and $500 worth of fireworks and they have started raising money for an elaborate funeral. The family will be releasing 300 lanterns to honor Ashanti.
The plan is to have four white horses at the funeral and decorate the venue with feathers, pride flags, and BTS merchandise. Ashanti was a big fan of the K-pop group and a proud member of the LGBTQ+ community.