Ashanti Smith, of West Sussex, England, died last Saturday, aged 18, of Huntchinson-Gilford syndrome (progeria), a rare accelerated aging disease commonly dubbed “Benjamin Button’s disease”, which made her age eight years every year of your life.
The young woman died weeks after her 18th birthday, but the illness left her with the body of a 144-year-old. The mother, Phoebe Louise Smith, paid tribute to Ashanti, remembering her as a “brilliant and stubborn” person who refused to allow her illness to affect her “noisy and beautiful” spirit.
The teenager died with her mother, father Shaine Wickens, 33, and family friend, Kayleigh Cartwright, 25. Some of her final words to her mother will have been “you’ve got to let me go.”
Ashanti, who was proudly gay and a fan of South Korean music group BTS, still managed to enjoy his last birthday in May with a night out, drinking his favorite cocktail, “Sex on the Beach”.
According to British media, the mother shared some details of the funeral of her daughter, who hopes to have four white horses, feathers, Gay Pride flags and BTS objects. The friends launched a JustGiving page to raise funds for the “greatest and brightest farewell ever”, planning a party to celebrate her life.
“Ashanti’s life was a joy. Although the progeria affected her mobility, it didn’t affect anything else,” said her mother, Phoebe. “She was a typical 18 year old and I loved everything about her. She was brilliant, she was an idiot. She spoke her mind and everyone knew it,” he recalled.
Phoebe recalled that the illness “did not affect Ashanti’s heart”, nor “her willpower or the way she felt about herself”. She felt beautiful every day. I made sure of that every day”.
The mother assures that, despite her serious condition, Ashanti was determined to be treated like any other teenager. “She spoke louder than me and I’m a very noisy person. There are pictures of her being identified for the first time. We all take her to the pubs. [bares], me and the girls,” recalled Phoebe.
Disease still has no cure
Progeria, also known as Hutchinson-Gilford syndrome, is an extremely rare, progressive genetic disease that causes children to age rapidly, starting in the first two years of life. The name derives from the Greek word meaning “prematurely old”.
Children with Progeria usually look normal at birth. During the first year, signs and symptoms such as slow growth and hair loss begin to appear. Heart problems or strokes are the ultimate cause of death in most children with progeria.
The average life expectancy of a child with progeria is about 12 years, but some die sooner and others live 20 years or more. There is no cure for progeria, but ongoing research gives some hope for future treatment.