Libby Smith, 16, from West Yorkshire wanted to become a professional dancer before she was diagnosed with juvenile idiopathic arthritis in 2011 after complaining for years about pains in her legs.
Many things made impossible for her after the condition as she was left in agonizing pain and suffering limited mobility due to having ankle fusion surgery on her right foot. She has been compelled to rely on her parents Diane Smith, 40, and Adrian Smith, 45, for help.
Libby walks downstairs on her bum and has to go out in a wheelchair as her wrists are too weak to use crutches. She said: “It feels like I’m trapped in an older person’s body, I feel like I’m in a hole that I can’t get out of.
“I’m waiting for operations to make life easier that are associated more with grandparents – people in their 70s and 80s – rather than my own age.
“I’m upset all the time, and I struggle to sleep at night. It’s like constant shooting pains that burn, I just want the knee replacement done as soon as possible.
“I’ve not completed a single day of high school and struggled with friends as I think people just don’t understand. It’s been really isolating not going to school. It’s been frustrating going through this, you get your hopes up that people with JIA grow out of it but I think it just got worse.”
Her mother Diane says it is ‘breaking her heart’ watching Libby’s health continue to deteriorate. She was desperate for answers so decided to post about her daughter’s condition on social media.
Diane’s post reads: “A cry for help from one mother to another. My daughter Libby has a very rare form of Juvenile Idiopathic Arthritis (JIA).
“Libby […] was diagnosed when she was just five years old with what we thought was a childhood condition that she would grow out of.
“Her condition is that severe she has never attended high school. She lives in constant pain, some days worse than others.
“Libby has been left extremely disabled. She has her right ankle fused and needs both knees replacing.
“The middle knuckle in her left hand has sung into the middle of her hand due to cartilage eating away at her wrist.
“She has many other damage and painful joints too including her jaws joints… she’s cried into her food many times, as she just can’t eat it.
“My reason for this post – it’s obviously breaking my heart watching her like this day in, day out.
“Hearing the words ‘Mummy, I don’t want to be here anymore’ are the words a parent should never hear.
“There must be somebody out there that knows more about this condition?
“Last week she was in so much pain, she was struggling to breathe which was then causing panic attacks.
“We took to A&E from the advice of the NHS helpline, we were sent home saying there was nothing more they could do for her.
“We were told to double up on her morphine and sleeping tablets. No child should have to live with pain like this, I’m at my wits’ end, I really am. Please share, we need all the help we can get. Living in hope, Diane xx.”
The devastated mother said Libby had always complained of aching legs but only received a diagnosis in 2011 after Adrian asked on taking her to Pontefract Hospital’s A&E department when the child avoided putting any weight on her right leg.
Diane said: “Libby was absolutely fine as a baby but as she got older she would say to me ‘I can’t walk’ and would say her legs were aching all the time.
“She would complain all the time, we just thought she was downright lazy.
“We were told it was a childhood condition that she should grow out of in her teens as she goes through puberty.
“They said if she didn’t grow out of it then she would probably grow out of it when she had her first baby because things change with hormones.
“She was measured up for crutches, a wheelchair and a walking frame and had physio organised.
“The only history we have of it in our family is with older people, like everyone’s family, nan and grandad had it a bit.
“Felicity is the complete opposite of Libby, she’s the most active child in the country so we knew there was no problem there.
Libby’s condition deteriorated after growing up and she was not able to attend secondary school and attempted to battle through the pain and study English and maths with tutors at home.
Her parents encouraged her passion for make-up and she set up her own make-up artist business last year. Diane said: “Libby’s not able to sit her GCSEs as she’s missed far too much school because she just wasn’t well enough.
“As parents we’ve been realistic and thought about what she would be able to do as an adult.
“Libby is really good at make-up artist work so we set up a business for her and recently swapped her English and math tutors for make-up artist tutors.
“She’s had a few clients but since Christmas she’s just not been well enough, so we’ve had to put the business on hold.”
The young teen even considered undergoing a bone marrow transplant to ‘re-set’ her immune system as she was in endless pain from juvenile idiopathic arthritis (JIA).
Her father Adrian said: “This condition is something you associate with someone who’s a lot older – she’s having to face issues that 80-year-old’s face at the age of 16.
“She hobbles around the house, going up and down stairs she does on her bum.
“When she walks it’s more like a shuffle, a move that older people do, and when we go out she has to use the wheelchair. She used to be able to brush her hair but we have to do it now, we also cut her meat up for her before she can eat. All these other kids her age are off on school trips and going out with friends after school but Libby can’t do that.”
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