A teenage girl has been left almost paralysed after her head fell off her spine due to a rare bone disorder that has caused more than 100 broken bones since birth.
At just 17 years old, Beth Cooper-Wares should be partying with friends and sitting her school exams in her hometown of Jiggi, near Byron Bay in northern New South Wales.
Instead, the teenager is stuck in a bed at Westmead Children’s Hospital in Sydney with a spine brace, known as a halo, drilled in to her skull following a catastrophic medical episode that began in August when her head separated from her neck.
Beth, who has been wheelchair bound since she was a child, was born with Osteogenesis Imperfecta (OI) Type III – a severe form of brittle bone disease which means simple tasks like walking and changing can leave her with broken bones.
Her mother Katie Cooper-Wares opened up to Daily Mail Australia about her highly intelligent daughter’s struggles as she tries to regain movement in her arms to follow her dream of being a writer.
Beth Cooper-Wares, 17, (pictured) was born with Osteogenesis Imperfecta (OI) Type III – a severe form of brittle bone disease
While the family knew Beth’s (pictured, left) condition would worsen as she grew, her mother Katie (right) said reality hit when her daughter started getting severe headaches
While the family knew Beth’s condition would worsen as she grew, the 37-year-old mum-of-one said reality hit when her daughter started getting severe headaches.
‘Her spine was moving up her skull and it was putting pressure on her brain,’ Ms Cooper-Wares said.
Despite an operation to relieve the debilitating pain in her head, the teen wound up in an ambulance five weeks later and was rushed into surgery.
‘During the operation the doctors realised her head had basically fallen off her spine,’ her mother explained.
Beth with her mother Katie when she was younger (pictured). The pair travelled the world together when she was 11
During their world trip, Katie drank coffee and Beth (pictured) ate croissants in Paris every morning before her condition detiorated
Doctors made the decision during surgery on September 18 to fuse her spine to her skull to keep it stabilised.
The teenager woke up on her 17th birthday to find that she not only had a halo drilled into her bones and a breathing tube down her throat rendering speech impossible, but she had lost the ability to move her body.
‘Her upper body used to be really strong – she used to play the ukulele,’ her mother shared.
Though she couldn’t speak with a breathing tube, Ms Cooper-Wares was able to figure out what her daughter wanted by lip reading.
‘She was in so much pain and hadn’t eaten for days, but she’s a real foodie and just wanted me to keep talking about food.’
Doctors made the decision during surgery on September 18 to fuse Beth’s spine to her skull to keep it stabilised
The teenager (pictured) woke up on her 17th birthday to find that she not only had a halo drilled into her bones and a breathing tube down her throat
The devoted mother spent hours by her daughter’s hospital bed spouting everything she knew about food to keep her entertained.
Once she exhausted her food knowledge, Ms Cooper-Wares asked her Facebook friends to give her more food facts to keep Beth distracted from her painful reality.
‘She would close her eyes and just listen.’
Ms Cooper-Wares also said Beth was on so much medication she swore she saw Pennywise – the killer clown from the Stephen King thriller, It – in the hospital.
Ten days on from spinal fusion surgery, Beth has regained some movement in her left foot and hand.
‘She’s happy about that because she writes with her left hand, but it’s very slow and we’re not sure how much strength she’ll regain.’
People with type three OI have a shorter life expectancy, with many surviving to their 30s.
People with type three OI have a shorter life expectancy, with many surviving to their 30s. Pictured: Beth with her passport as a child
‘They often die in their sleep,’ Ms Cooper-Wares. ‘That has happened to a lot of people with the condition.’
‘Sometimes, when she’s asleep, I go into her room and watch her breath. To make sure.’
Despite the prognosis, Ms Cooper-Wares said her daughter is ‘crazy resilient and strong’.
‘She’s so smart – she’s the top of all her classes and she has a lot of patience.’
‘I don’t think I would be able to deal with the things she’s dealt with in her life up to this point – she’s incredibly strong.’
To aid Beth’s recovery, the family created a Go Fund Me page to help ensure her mother can continue to care for her without worrying about how to pay the bills.
Despite the prognosis, Ms Cooper-Wares said her daughter is ‘crazy resilient and strong’ (pictured: Beth as a child)
The money will cover medical costs that aren’t part of the National Disability Insurance Scheme, along with a home set up to make Beth more comfortable – such as an electric bed.
‘She’ll also need to wear a medical and it’s made of sheep skin, so coming into summer, we’ll need to get air conditioning to make sure she’s cool.’
Beth plans on finishing school in 2021 and studying creative writing at university.
At the age of 11 in 2015, Ms Cooper-Wares decided that her daughter needed a boost before facing the major surgery scheduled in her teenage years to help her mobility.
Beth dreamed of swimming with turtles, riding in a hot air balloon at sunset, seeing a show on Broadway, seeing elephants in the wild, having a mud bath in China and volunteering to teach English in India.
She came up with a plan to help Beth see the world and empower her for the future.
The got Beth a wheelchair and sold all their possessions, including the car, to make the trip happen.
Ms Cooper-Wares said the trip definitely made Beth more wordly and was a fantastic experience for her to have.
What is Osteogenesis Imperfecta Type III?
Osteogenesis imperfecta (OI) is an inherited bone disorder that is present at birth, also known as brittle bone disease.
A child born with OI may have soft bones that break easily, bones that are not formed normally, and other problems.
Type III is the most severe type in babies who don’t die as newborns.
At birth, a baby may have slightly shorter arms and legs than normal and arm, leg, and rib fractures.
A baby may also have a larger than normal head, a triangle-shaped face, a deformed chest and spine, and breathing and swallowing problems.
There is no known cure.
Source: Hopkins Medicine