She touched hearts: Teen with rare premature aging disease dies at 18
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A UK mom is mourning the loss of her “strong-willed” daughter, who passed away at age 18 from a rare “Benjamin Button” disease that left her with the body of someone eight times her age.
“Everyone loved and adored that little girl. She touched their hearts so much with her willpower,” Phoebe Louise Smith told Kennedy News of her loss.
The 36-year-old’s daughter, Ashanti Smith, died Saturday from complications stemming from Hutchinson-Gilford progeria syndrome, a rare congenital condition that causes the sufferer to age eight years for every year of their life. The aberration also causes severe heart problems, mobility issues and other complications associated with aging, according to the Mayo Clinic.
Despite having the body of an 144-year-old, Phoebe said that her baby girl refused to let her ailment break her “loud and beautiful” spirit while she was alive.
“It didn’t affect her heart, her willpower or the way she felt about herself — she felt beautiful every day,” said the proud mother. “I made sure of it every day.”
Just months before her death, the West Sussex resident had been celebrating her 18th birthday by sipping her favorite cocktail, Sex on the Beach, at a bar with her mom and friends, Kennedy News reported.
“‘She got tipsy and she loved it,” fawned Phoebe of her daughter’s first girls’ night out. “There are photos of her first getting ID’d. We all took her out to the pubs, me and all the girls.”
However, whenever one of the gals offered to get Ashanti a drink, “She’d say, ‘I’ll get it — what are you treating me different for?’ ” said Phoebe, who added, “She was very strong.”
Unfortunately, while the progeria syndrome didn’t affect her will, it did impact “her mobility and she had heart disease” and arthritis, according to her devastated parent.
“She had a broken hip, and it had to be set back in three times, then eventually it came out again,” explained Phoebe. Nonetheless, her proud daughter refused to ride in a car, instead opting to be carried or to even walk on her busted hip.
Several months later, the thunderbolt struck.
The ill-fated day started out “absolutely fine,” with the plucky teen walking around the park and “having KFC,” according to her mom. But shortly thereafter, Ashanti’s health began to deteriorate.
“It was very upsetting,” recounted family friend Kayleigh Cartwright, 25, who was with the ailing girl at the time. “She had been feeling a bit sick. Shaine [her father] brought her home because she said she wanted her mother, [then her condition worsened].”
Ashanti died with her mother, father Shaine Wickens, 33, and Cartwright at her side, with her last words being, “Mum, I love you. You’ve got to let me go,” recalled a distraught Phoebe.
The plucky gal officially died of heart failure and natural causes, according to Kennedy News.
Ashanti’s bereaved family and friends have since paid tribute to the deceased youngster.
“Her condition didn’t affect her [mentally] at all. She was just, normal. She was like any other child,” said Cartwright. “To be with her, she was just like everybody else.”
She added, “[On the outside] she was 100 and on the inside, she was 18.”
“Ashanti’s life was a joy,” seconded Phoebe. “She was a typical, stroppy 18-year-old, and I loved everything about her. She was brilliant, she was gobby. She spoke her mind and everyone knew it.”
In order to give Ashanti a proper sendoff, the family reportedly set off 150 helium balloons and more than $500 worth of fireworks and plans to release 300 lanterns as well.
They’ve also started a JustGiving page to help fund a lavish funeral, which will reportedly feature four white horses, feathers galore, Pride flags in homage to Ashanti’s “proud” gay identity, and memorabilia themed after famed K-pop group BTS — one of Ashanti’s favorite bands.
“It’s going to be a party,” said Phoebe of the extravagant life celebration. “She’s having a widescreen with videos playing and, because she swore a lot, [there’s] going to be a bleeper. Everyone who sees the video will laugh so hard.”
Unfortunately, there is currently no cure for progeria syndrome. However, the Food and Drug Administration recently approved a drug named Zokinvy (Ionafarnib) which has been shown to extend patients’ lives by more than two years.
No word as to whether it works on the aberrant strain mandibuloacral dysplasia, a premature aging ailment with only one known sufferer.
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