Quadruple amputee Charlotte Cleverley-Bisman never asked to be famous. But at six months old, her inspirational tale of surviving a severe case of meningococcal disease, believed to be the youngest baby in the world to do so, sparked interest from local and international media. Charlotte's story is so well known that you need only mention the words "meningitis" and "Baby Charlotte" and most people will know who you're talking about. More print and television exposure followed after young Charlotte became the face of a campaign supporting vaccination – she even has her own Wikipedia page. Every milestone in her life attracts cameras and reporters, and next year, another major event will occur when Charlotte becomes a teenager.
Opinionated and headstrong, Charlotte, who is nearly 12, tells the Weekly about how spending more than 10 years in the public eye has coloured her life.
"I want to be famous for something else. I want to be known for just being me and not for being 'Baby Charlotte'," she begins, somewhat defiantly.
But it's hard to erase the graphic image of tiny Charlotte in hospital, fighting for her life, her body turned black and purple from the devastation of the infection. It's a miracle that she survived, but it came at a harsh price when the little girl became the country's youngest quadruple amputee. Charlotte's courageous tale of winning against incredible odds is inspirational. But she's fast becoming a young woman and is desperate to be her own person. In fact, she reveals she is drawn to a goth subculture called "emo". Emo is the word used to describe both a type of emotional rock and pop music, and the people who enjoy it.
"I like the emo hairstyle and make-up. I just want to change completely and be seen in a way that people have not seen me before. I want to be individual."
Her mother Pam Cleverley, who has two adult daughters, Ruby (23) and Riwa (19), says Charlotte's determination and self-awareness is a sign that her teenage years are approaching.
"She doesn't want to be known for being a quadruple amputee, but for the talented person and wonderful human being that she is," Pam tells.
The two of them have been spending some time on a friend's Auckland farm. They live on Waiheke Island and Pam says it's a luxury for them to be able to get away and enjoy the countryside. Charlotte loves the farm and lights up when she's with her friends. Despite her physical impairments, her favourite part is hoisting herself onto the trailer and doing laps around the farm while her mate Nathan rides the quad bike.
"This is what I enjoy," she says with a huge smile. "Having fun and being with my friends."
Now that she's getting older, Charlotte has also noticed some changes. "I sleep more, I worry about my hair a lot more and I wear a lot more make-up," she explains. "I knew that someday I'd have to grow up."
At Waiheke High School, Charlotte is very social and participates in most activities, including swimming and basketball. And despite the fact that she has no fingers, a tiny cleft in her arm allows her to perform the most important function for any teenager – texting and sending messages on her mobile phone. She's so connected to her phone that she hardly puts it down during the whole day the Weekly spends with her.
Pam, who shares care of Charlotte with her dad, Perry Bisman, admits her daughter's future weighs on her mind.
"I can't predict the journey for Charlotte because I don't have anybody to go off," she tells. "What I do have is a lot of hope. I worry as a mother and always think about who's going to help her when I go. I hope that technology will change enough so that there are resources to help Charlotte become more independent."
Charlotte doesn't receive support from ACC as she became an amputee through an illness, not through an accident. The bulk of funding for resources comes from a trust that fundraises for Charlotte's needs. These include prosthetic legs, which need to be changed as regularly as new shoes, since she is still growing. The prosthetics are very painful for her to walk in, but she handles it, in an attempt to live as normal a life as possible. The trust also raises money for Charlotte to attend Camp No Limits every year – a US initiative for children with limb loss.
"Charlotte started going to the camp when she was young," says Pam. "Before then, she didn't realise that there were other children in the world just like her."
Pam says that Charlotte's can-do attitude has made her extremely popular with the other children. She regularly inspires others to make changes in their own lives.
"There was a nine-year-old girl who only had one foot and had so many difficulties with it. She saw how Charlotte was coping and the little girl made the life-changing decision to have her foot amputated. She saw that Charlotte could do it and knew that she could too."
Charlotte has also formed close friendships with two mentors. There's Cameron Leslie (25), the Kiwi paralympic swimmer, and Cameron Clapp, a 29-year-old American motivational speaker and actor who she met when she was four years old at Camp No Limits. He lost both legs and his right arm after being hit by a train in 2011. Cameron Clapp travelled to New Zealand in January and both men helped Charlotte adjust to her new prosthetic legs.
Both Camerons are well known in their individual fields – and Charlotte wants to be just as famous as them and make her mark on the world.
"I like filming and putting my stuff up on YouTube," she says. "I want to have my own studio with professional cameras and lighting."
Her proud mum says her daughter would make a great film director and could be the next Peter Jackson.
"All her life, she's dealt with medical staff and caregivers, so she's good at directing people," Pam explains.
Charlotte also loves to sing and act, and recently had a role in a Waiheke Island community show – playing a penguin. Another way she could make her mark in the world could be helping animals. Charlotte has a close connection to her mobile assistance Labrador Callie. In fact, many people on the island call her "the dog whisperer" because of the way she can calm even the toughest canine. Pam would like to her to become a motivational speaker – just like Cameron Clapp, who travels the world for his work.
"There's nothing wrong with her mental ability. The reason why she beat and has overcome the most horrendous disease is because she is a real fighter. She has lots of goals, and we just have to give Charlotte the tools to adapt to the world, and not have the world adapt to her."
WATCH: Brave Charlotte and her mentor Cameron
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