Darcey defies the odds to walk again after rare disease paralysed her
PUBLISHED: 18:50 18 November 2018 | UPDATED: 17:03 20 November 2018
Step by step a brave 10-year-old learned to walk again after she was paralysed by an extremely rare disease.
Charlene Hayman suspected her daughter Darcey was just the latest in the family to be struck down by a winter bug last Christmas, as one by one her, her husband Dean, and son George had been sick.
But when Darcey woke up having vomitted and was unable to use her legs, the worried mother knew it was something more sinister.
“I was carrying her to the toilet,” Mrs Hayman, 39, said.
“So I rang the doctors and said someone needs to come out but they said that wasn’t possible I’d have to take her in the car and they’d meet us in the car park with a wheelchair.”
Mrs Hayman, of Valerian Rise, Thetford, was told Darcey had a severe urinary tract infection and to take her home to get a urine sample.
But not satisfied and sure there was something wrong with her little girl, she took her straight to A&E at West Suffolk Hospital instead.
It was at the outstanding-rated hospital where they were lucky to find a nurse who had previously worked at Addenbroke’s. She thought Darcey might have Guillain-Barré syndrome, a rare autoimmune disorder and she was rushed to the Cambridge specialist site.
Mrs Hayman said: “They scanned her spine and they couldn’t see any white matter.”
White matter acts as the wiring in the spine and carries information, it is through this messages pass between different areas of the nervous system.
“She had her brain scanned too and she had seven lesions to her brain,” she said.
A lesion is an area of area of tissue in the brain which has been damaged.
By that point, doctors knew Darcey did not have Guillain-Barré syndrome but instead a disease found in just eight people in every one million called acute disseminated encephalomyelitis (ADEM).
It meant Darcey’s immune system had become mis-programed and telling immune cells to attack the healthy covering of the nerves.
“We were told the reason they didn’t think it was ADEM at first is those patients usually come in in a coma,” Mrs Hayman said.
Darcey was placed on a huge dosage of intravenous steroids but there was no response in her legs so she was given a plasma exchange.
Until a few days later when Mrs Hayman was rushing back to the hospital after spending son time at home with Darcey’s 13-year-old brother.
She said: “She called me and said ‘mummy where are you? I’ve got good news’.
“But good news for Darcey then was that her favourite nurse was working.
“I walked in, and her feet would get really dry, so she asked me to put some cream on her feet and she started wiggling her toes and I started crying and slowly it all started to come back.”
The family spent eight weeks in Addenbrooke’s before being accepted for a place at the prestigious National Spinal Injuries Centre at Stoke Mandeville Hospital.
“She worked so hard, when we got there they said it would take three to six months but we got out in 10 weeks. She’s still building up muscle and there’s still a way to go but she’s learned to walk again. But this could have been so much worse.”
Along with her best friend Ellie Norry, Darcey managed a one-mile sponsored walk and managed to raised enough to buy toys and gifts for the play rooms at Addenbrooke’s and Stoke Mandeville. Plus a TV for one of the wards.
“I tell her every day how amazing she is,” Mrs Hayman said. “We often go through the what ifs, what if I could have got to the hospital quicker? But I couldn’t have really. What if I’d have gone home and listened and not taken her to the hospital?”
Darcey’s battle is not completely over, as she was also diagnosed with a condition called Aanti MOG positive, meaning she could easily relapse and leaving her parents on constant high alert.
And she still has to use a catheter to use the toilet.
But Mrs Hayman said Darcey could not have coped without her friend Ellie.
“They’ve been friends since they were born, she’s the only one Darcey will let stay over. She’s been a great support.”