14-year-old Emily was left paralysed in an Edinburgh hospital just 48 hours after falling ill with what she believed were the symptoms of tonsillitis – that triggered a rare condition
A teenage girl paralysed by a rare condition mistaken for tonsillitis has made a miracle recovery.
Mum Sarah Anderson has spoken out after daughter Emily was hospitalised earlier this year. The 14-year-old began feeling ill with a cough and loss of appetite in January with her family initially putting it down to the common infection.
But when she collapsed at home in Kelso in the Borders, Emily was rushed to hospital where doctors discovered she was suffering from a multitude of infections which had compromised her immune system, leading to double pneumonia. The youngster has already been battling tonsillitis and covid, as well as mycoplasma – another common infection.
Emily’s pneumonia triggered her central nervous system, resulting in a rare condition called Guillain-Barré Syndrome. Sarah, 49, described the situation as “the perfect storm” for the neurological condition, which can affect breathing and mobility and leave patients floored for weeks.
Sarah, 49, told Edinburgh Live: “We thought she was getting over the tonsillitis. By tea time, she didn’t feel like eating and had developed a funny cough. Then on Monday, Emily collapsed while heading to the bathroom.”
Emily was taken to Borders General Hospital where she went into respiratory arrest and stopped breathing. She was then immediately blue-lighted up to a children’s in Edinburgh. Fraught Sarah went to bed that evening believing Emily was stable. But more horror was in store when she returned to the ward in the early hours of the next morning.
She said: “I headed into Emily’s room when the medics swung round and said, ‘She’s completely paralysed, and her body is shutting down, and we don’t know why’. It was then she received her diagnosis of GBS. It was a pretty bleak picture after that; we didn’t know how well Emily would be after that.”
Emily was given immunotherapy before being moved onto plasmapheresis, also known as plasma exchange therapy. “That is where all of her blood is flushed out, and they separate the plasma from the blood and replace it with synthetic plasma,” Sarah explained.
“This is to take away the inflammation markers that her brain was sending to her nervous system to ‘shut down’; then, it was pumped back into Emily’s body.” Emily had six courses over eight days, becoming the hospital’s youngest recipient of plasmapheresis in years.
On day nine, progress was made when staff noticed some slight movements. Prior to that, she had been awake and lucid, but unable to speak or move, communicating via only eye movements to yes or no questions.
“She was like Sleeping Beauty; it was like watching her body slowly wake up,” Sarah said. Emily was on ventilation until March and spent 149 days in hospital, despite estimates she would be there for as long as a year.
Describing the horrific five months, Sarah said: “It was like becoming a member of a very worst secret club, and once you do, you are a member for life. It’s an insight into a world that to my great shame, I had no idea how challenging it was to have a child in critical care.
“We had to bear witness to some terrible things while in there and we are one of the fortunate families who got to bring our child home.” She added: “The Ronald McDonald House gave me a home for five months, they made sure I was okay on the bad days, and that is why we want to fundraise for the charity. We are raising funds to support the critical care unit with additional tech and we want to be able to sponsor a room in the Ronald McDonald House for a year, for another family.” You can still donate to Emily’s fundraiser for the Ronald McDonald House in Edinburgh.