A 9-year-old girl, who became paralyzed from the neck down due to a rare neurological disorder, has gone back to school and is now able to walk using a frame after receiving specialized rehabilitation.
Georgia Wynes, from Bath, described her daughter Ivy Amos as a “joyful and well” child who “had no health issues throughout her life” prior to becoming sick in February 2024.
Ivy was eventually diagnosed with transverse myelitis, which results from inflammation of the spinal cord, and she became paralyzed from the neck downward.
However, due to a free week of specialized activity-based rehabilitation at Neurokinex, a registered charity that assists people with paralysis, she is making significant progress toward recovery.
Currently, Ivy is fundraising for Neurokinex and its facilities, which Georgia refers to as a “lifeline,” via a social media challenge designed to help thousands more individuals with spinal cord injuries receive free rehabilitation sessions.
Ivy’s struggle started in February 2024, when she was eight years old. She had been unwell, initially thought to be due to a virus, and Georgia had taken her “back and forth” to the doctors.
However, on February 27, Ivy experienced a seizure at home.
“It was a significant confiscation. It lasted for an extended period,” Georgia stated.
She needed to be transported by air ambulance toBristolChildren’s Hospital, where she remained for approximately a week – she was diagnosed with viral meningitis.
After a week, Ivy was released with a prescription for antibiotics and appeared to be recovering well from the meningitis. Georgia would bring her to their local hospital every day for the next dose of medication, but one day Georgia noticed that something “wasn’t right” with Ivy.
“I had a feeling something was off, and she mentioned experiencing neck pain,” Georgia said.
I pleaded with them right there and then, saying, ‘Please, can you examine her?’
Ivy underwent a brain MRI, and everything appeared normal. They kept her hospitalized, and within a few hours, she began losing sensation in her feet, which gradually spread up her body.
They sent her for another MRI of her spine this time, and they discovered that her entire spine was inflamed, which led to us being quickly taken back over toBristol Children’s Hospital again.
They identified her condition as transverse myelitis.
Symptoms of transverse myelitis
NHS Inform
The signs of transverse myelitis may involve:
- weakness in the legs, and occasionally in the arms
- mobility problems
- unusual sensations and numbness
- bladder problems
- bowel problems
- sexual problems
- pain
According to the NHS, transverse myelitis is a uncommon neurological disorder resulting from inflammation of the spinal cord, which harms the nerves and may lead to lasting scars or lesions that disrupt communication between the spinal cord and the rest of the body.
Symptoms may involve muscle weakness in the legs and arms, difficulty moving, numbness, and pain – and in Ivy’s situation, nearly complete paralysis.
“Ivy was unable to move anything below her neck,” Georgia stated.
She spent between nine and 10 weeks in the intensive care unit, required a ventilator, and needed a tracheostomy.
After Ivy was discharged from the intensive care unit, she started receiving physical therapy and quickly recovered feeling and movement in the upper part of her body. Nevertheless, she was still unable to move her legs or walk.
We departed from Bristol Children’s Hospital and were sent to Stoke Mandeville to consult a spinal cord specialist – Ivy remained there for five weeks and underwent intensive physiotherapy.
When Ivy was released, Georgia felt she was “thrown into the deep end” while trying to continue her recovery.
“We weren’t planning to quit,” she stated.
We were really only provided with community physio, which occurred once a week at most, and it didn’t last very long. Now they only see her every three to six months, just once to check on her progress. It’s all up to you and the efforts you make at home.
Nevertheless, Georgia recalled a discussion she had with another mother whose daughter was at Stoke Mandeville Hospital along with Ivy. During that conversation, Georgia was introduced to Neurokinex, a non-profit organization that focuses on individuals with paralysis and provides neurological, activity-based rehabilitation to encourage and develop neural pathways.
“I was deeply fascinated,” Georgia remarked.
I did some additional research on it, and we had a free week there after finishing at Stoke Mandeville. I thought it was amazing. I thought, ‘This is the place where Ivy should go.’
They were very knowledgeable about Ivy’s condition, and I felt this was the place that would provide the best help for Ivy. So our journey started at Neurokinex, and we’re still there today.
In November 2024, Ivy managed to secure a complimentary week of rehabilitation via Neurokinex’s Step Up Scheme, offering six one-hour sessions to those who have received a spinal cord injury diagnosis within the past year, at no cost.
Rather than the participant covering the cost, the Step Up Scheme sessions are supported through donations and Neurokinex’s fundraising efforts.
Currently, Ivy attends two one-hour sessions each week at the clinic, where the student mentions she “plays many games” as part of her therapy, such as “Taylor Swift quizzes,” which she really enjoys. However, Georgia would like to extend the time Ivy spends at Neurokinex’s Bristol facility once financial circumstances permit, as she believes it is very helpful for Ivy’s recovery.
“I simply feel that Neurokinex has been another ray of hope for us,” she stated.
There aren’t many places like that out there, and I believe they’ve provided us with the hope we all needed, especially for Ivy. They make her feel very welcome, and we consider it somewhat of a second home, where she’s always excited to go… They’re truly remarkable people.
Ivy is now able to walk using a frame, and she has recently begun her fifth year of school, slowly regaining her independence as her mobility continues to improve. However, Georgia is unsure if she would have achieved the same progress without the Neurokinex Step Up Scheme.
Ivy is currently participating in the annual Neurokinex Step Up challenge, which aims to raise money for providing free sessions at Neurokinex clinics nationwide to aid in recovery.
The current social media campaign is called #TopBinsSmallWins, encouraging individuals of all ages and abilities to record a trick shot into a bin, challenge three friends, and contribute what they can to the Neurokinex Charitable Trust.
“You’re free to use any ball you like… but you need to attempt your shot, making it difficult, and aim for the bin,” Georgia explained.
Ivy is currently attempting to stand on a frame, as it presents a greater challenge for her… she’s trying to throw her ball into the bin.
The objective, Georgia stated, is “to raise £50,000.”
That will assist numerous individuals in experiencing a week of freedom and truly understanding how remarkable Neurokinex is.
For more information on the challenge, go to neurokinex.org/top-bins-small-wins/. To make a donation, visit donate.neurokinex.org/donate.
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