Ivy Amos, a once healthy and active nine-year-old from Bath, found her life turned upside down in early 2024. After weeks of mysterious illness initially thought to be a virus, Ivy was diagnosed with transverse myelitis, a rare neurological condition that inflames the spinal cord and can cause paralysis.
Her mother, Georgia Wynes, recalls the harrowing experience. “Ivy had never had any health problems until February, when she suddenly became unwell. We took her to the doctor multiple times, but it was only after a severe seizure that she was airlifted to Bristol Children’s Hospital and diagnosed with viral meningitis,” Georgia said.
Although Ivy seemed to recover from meningitis after a week-long hospital stay, her condition rapidly worsened. “I noticed she was complaining about neck pain and losing sensation in her feet. A spinal MRI revealed inflammation all the way up her spine. That’s when they diagnosed her with transverse myelitis,” said Georgia.
The severity of Ivy’s condition was overwhelming. She became paralyzed from the neck down, spent nearly ten weeks in intensive care on a ventilator, and required a tracheostomy. After leaving intensive care, Ivy began physiotherapy and gradually regained movement in the upper half of her body. However, she remained unable to move her legs.
The family’s rehabilitation journey continued at Stoke Mandeville Hospital, where Ivy underwent intense physiotherapy for five weeks. Despite this, the support available afterward was limited. “Once we left the hospital, it felt like we were left to manage on our own. Community physiotherapy was sparse, and follow-up appointments became infrequent,” Georgia explained.
Hope arrived when Georgia discovered Neurokinex, a charity offering specialist, activity-based neurological rehabilitation for people living with paralysis. After a free introductory week funded by donations, Ivy began regular sessions there. “Neurokinex felt like a second home. The team understood Ivy’s diagnosis thoroughly and provided a type of care we hadn’t experienced before,” Georgia said.
Thanks to Neurokinex’s Step Up Scheme, Ivy accessed six free one-hour rehabilitation sessions, which she continues to attend twice weekly. During these sessions, Ivy enjoys game-based therapies, including her favorite “Taylor Swift quizzes,” making rehabilitation enjoyable and effective.
Now, Ivy has made remarkable progress. She can walk with the support of a frame and has happily started Year 5, steadily regaining independence. Georgia credits Neurokinex with providing the crucial support Ivy needed to improve her mobility and quality of life.
To support others like Ivy, Neurokinex runs an annual fundraising challenge called #TopBinsSmallWins. Participants attempt trick shots into bins, nominate friends, and donate to help fund free rehabilitation sessions for people with spinal cord injuries. This year, Ivy herself is taking part, targeting a £50,000 goal to expand access to Neurokinex’s life-changing programs.
Georgia’s message is clear: “Neurokinex has been our lifeline. There simply aren’t many places like it. We want to raise as much as possible to give others hope and support in their recovery journeys.”