Rare spine disorder leaves girl paralysed
What started out as tingles in a Wellington girl’s legs turned into a nightmare for her wha¯ nau as she became suddenly paralysed during a sports class.
According to a Givealittle page, on December 4 last year, the world for wha¯nau of Te Ao Ma¯rama Jolley was ‘‘turned upside down’’, when the then 9-year-old became suddenly paralysed. She has since turned 10.
‘‘It’s like having everything you think you want for your kid put behind a wall, and there’s no way under, over or around. Only through,’’ Sophie Jolley, Te Ao Ma¯rama’s mother, said in the Givealittle page.
It all started one afternoon when Te Ao Ma¯rama was running at school – Te Kura Ma¯ ori o Porirua – during a PE lesson, and her legs began feeling ‘‘weak and tingly’’, the page said.
After being taken to the sick bay there, things ‘‘quickly took a turn for the worse’’.
By the time her mother, Sophie, arrived to collect her from school 20 minutes later, Te
Ao Ma¯ rama wasn’t able to move her legs at all.
She was taken to Porirua’s Kenepuru Community Hospital, north of Wellington, where she was then ‘‘inexplicably ... sent home to ‘rest’ ’’, the page said.
Later that evening, Te Ao Ma¯rama was transported by ambulance to Wellington Regional Hospital.
While there, a number of specialists assessed the girl. She spent the following five weeks undergoing ‘‘a series of incredibly invasive tests’’ and treatment with little to no success.
Eventually, Te Ao Ma¯rama was diagnosed with a rare neurological disorder – acute transverse myelitis, which is marked by an inflammation of the spine.
The diagnosis has resulted in spinal cord lesions, and full paralysis from the waist down.
On December 30, Te Ao Ma¯ rama was airlifted to The Wilson Centre in Auckland for physiotherapy.
‘‘Despite the devastating circumstances and an uncertain future, Ma¯ rama remains unbelievably strong and positive – never once complaining about the terrible hand she had been so swiftly dealt.’’
The page said her mother, Sophie Jolley, had to give up her fulltime job to be with Te Ao Ma¯ rama at all times.
Te Ao Ma¯ rama’s wha¯ nau hope to fundraise enough money to send her to a spinal injury rehab facility on the Gold Coast in Australia early next year.