A teenager who dreamed of being a professional dancer is now unable to walk after a rare condition has left her ‘trapped’ in a body equivalent to an 80-year-old’s.
Libby Smith, 16, has juvenile idiopathic arthritis (JIA), a condition that causes inflammation of the joints and eats away at her cartilage, therefore making everyday tasks such as walking, cutting up food, and brushing her hair impossible.
The schoolgirl is in such constant, agonising pain due to the condition she even considered undergoing a bone marrow transplant to ‘reset’ her immune system, but ultimately decided not to because of the risks associated with the procedure.
Libby received the devastating diagnosis in 2011 when she was just five years old, after complaining of aching legs. Her dad, 45-year-old Adrian Smith, insisted on taking her to Pontefract Hospital’s A&E department when she avoided putting any weight on her right leg.
Mum Diane, 45, explained:
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.
As she was our first child we didn’t have anything to compare her to, we just thought that she had little legs and was tired. One Sunday when she was five she hopped round on her left leg all day. Adrian told me to pack a bag and that he was taking her to A&E.
After a week of blood tests and X-rays, Libby was diagnosed with JIA, with Diane and Adrian being told it was a childhood condition ‘she would grow out of in her teens, as she goes through puberty’.
Libby, however, didn’t ‘grow out of it’, and since her diagnosis her mobility has only deteriorated, leading to the teenager requiring ankle fusion surgery on her right foot and having a Ilizarov leg brace fitted.
She is also in need of two knee replacements, as she is currently forced to hobble around her home, ‘shuffle’ down the stairs on her bum, and go out in a wheelchair, as her wrists are too weak to use crutches.
The schoolgirl is in so much pain that she has to rely on her parents for help, with diet consultant Diane saying she’s ‘at her wits’ end’ as it’s ‘breaking her heart’ watching her daughter’s health continue to deteriorate.
As she continued to struggle, Libby was forced to stop attending secondary school, although she attempted to battle through the pain and study English and Maths at home with the help of tutors.
Despite this, Diane said they sometimes had to send the tutor home because Libby ‘wasn’t well enough’. She explained: ‘Some days she would manage an hour and other days she could do two, but not very often.’
Libby’s physical limitations, coupled with missing so much school, means she isn’t in a position to sit her GCSEs. The teenager said it’s been ‘really isolating’ not going to school as she’s ‘struggled’ with friends, adding: ‘I think people just don’t understand.’
Libby, from Hemsworth, West Yorkshire, continued:
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.
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.
The schoolgirl has undergone a number of surgeries in a bid to combat her painful symptoms, but so far nothing has worked. Her symptoms have become so severe she has even considered undergoing a highly risky bone marrow transplant in an attempt to reset her immune system.
Dad Adrian said:
The consultants describe Libby as ‘not following the script’. Instead of her body accepting medicines that have been successful for other people, it rejects it. Libby was looking into a bone marrow transplant to reset her immune system not so long ago because they were running out of ideas as far as treating it with normal medications.
The doctors were very blunt about the risks and said she might not make it – there was a substantial percentage that we’d lose her. It wasn’t because of the procedure, but because of the bacterial medication she’s on that increases the risk of her not coming through the resetting of her immune system.
We were on the last family of medicines before Christmas and it started working so she decided she wouldn’t go ahead with it.
Her parents are desperate to find medication or a procedure that will successfully treat Libby’s condition, with Adrian saying they will pay for anything as long as they can get answers. ‘Sod the funding. If it makes me bankrupt, I’ll pay for it,’ Adrian said.
Hopefully the family will be able to find something to help Libby soon and she’ll be able to start her road to recovery.
Keep fighting, Libby.
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A Broadcast Journalism Masters graduate who went on to achieve an NCTJ level 3 Diploma in Journalism, Lucy has done stints at ITV, BBC Inside Out and Key 103. While working as a journalist for UNILAD, Lucy has reported on breaking news stories while also writing features about mental health, cervical screening awareness, and Little Mix (who she is unapologetically obsessed with).