Charlotte McLean. Photo / George Novak
Charlotte McLean used to spend her free time swimming, dancing, and hanging out with friends.
Now, walking and other day-to-day tasks were almost impossible for the 14-year-old to do alone.
Charlotte was diagnosed with functional neurological disorder (FND) and complex regional pain syndrome (CPRS) in July last year.
The Pāpāmoa teenager can't even go outside in the rain or wear long pants due to the intense pain it causes in her right leg.
"It feels like I am just missing out on normal teenage life," she said.
"I have got really good supportive friends, but they still go out and do things and it is hard to just watch them do that.
"Even though the diagnosis completely turned everything upside down, it is possible to live a good life with these chronic illnesses."
Charlotte's dream is to help other young people battling chronic health conditions to "realise they are not alone".
Earlier this year while bedridden in hospital, Charlotte applied for funding to write a book about her health journey through Manawanui's Fund for Good innovation programme.
In March, shortly after being discharged from hospital, Charlotte received some good news. She would receive $3000 towards writing a book.
"It was the first good thing I had heard in a long time," she said.
FND is a medical condition in which there is a problem with the functioning of the nervous system and how the brain and body sends and/or receives signals, according to the National Organisation for Rare Disorders.
A form of chronic pain, CPRS is an uncommon condition and usually affects a limb, according to Starship Hospital. It often occurs after surgery or an injury.
Described by her parents as a "typical teenager" who had a "heart to help", Charlotte's diagnosis came after a series of "out of the blue" seizures and an incident where she knocked herself out from bumping into a wall.
Since then, she has used a wheelchair or crutches to get around. At times she had been bedridden for days on end unable to sit up.
"A year ago everything had to stop because I couldn't really function at all to do day-to-day tasks," Charlotte said.
"I have spent a lot of time in hospital the past year, and I am very dependent on a lot of people to do normal things.
"I have had to relearn how to do everything in a modified way, which is a big challenge."
Charlotte attended physiotherapy sessions about four times a week.
Her mother Ange McLean, who was a primary teacher, resigned from her job last year so she could care for her daughter full time.
"At its worst, even if a strand of her hair falls on her leg, or an ant crawls on her leg, or there is a big gust of wind, she would blackout because the pain is so intense," Ange said.
The unpredictability of the chronic conditions meant Charlotte's health was constantly fluctuating. Intense pain, non-epileptic seizures and paralysis episodes were just some of the symptoms she experienced.
"Charlotte can make some huge gains and then take a few steps back. It has been quite a roller coaster," Ange said.
"She is just a typical teenage girl. A lot has changed for her, but she is still Charlotte."
Charlotte believed there was a lack of understanding surrounding her conditions, which increased feelings of loneliness.
"It feels quite isolating because no one really gets it. It's very hard for people to relate," she said.
Her father Tony McLean agreed.
"It is not well understood, people think you are just making it up. But it really does have profound physical implications," Tony said.
The book would be about Charlotte's experience learning to live with chronic illness, along with tools she used to get through.
She was in the early stages of writing and now seeking a mentor who could help guide her through this process.
"We are looking for someone in the local community to give some guidance. Charlotte's heart really is to help others - that is 100 per cent the point of the book," Tony said.
The Year 10 student, who studied through the Northern Health School, was also a student at Mount Maunganui College.
She formed strong friendships after meeting others in similar situations at a rehabilitation centre for children in Auckland.
"They know what you mean when no one else does, and they believe everything you say. And it is really inspiring to know someone personally who is going through it," Charlotte said.
Ange said being able to walk again was "absolutely" a possibility for her daughter.
"There is a big emphasis through regaining functionality and hoping that overrides the symptoms. There is no permanent damage as a result of what Charlotte currently has."