A brave Ayrshire girl was rushed to hospital with severe nerve damage after a sick bug became a rare disease which affects just one in a million.
Four-year-old Grace MacMillan from Ayr has battled against an incredibly rare variant of Guillain-Barré Syndrome, called Miller Fisher Syndrome, which sees the immune system attack healthy nerves.
Mum Shona wants to raise awareness of the disease which doctors warned is on the rise, with parents urged to look out for headaches, limb pain and poor coordination.
Mum-of-two Shona, 35, told Ayrshire Live: “It was frightening. I still can’t get my head round how my child went from 'normal' to seriously ill in a few days.
“The hardest part was waiting for five days whilst your wee girl is in hospital and you or the doctors don’t know what’s wrong with her. It was horrific.”
Concerns grew after Grace failed to bounce back from a sick bug which lasted only a few days.
Shona has told how her daughter would spend unsettled nights crying out, up every few hours complaining of headaches, a week after she first caught the bug.
“The usual pain relief didn’t seem to help," she said. "By the end of the week she would come out in a blotchy rash when she said she was in pain.
“Call it mother's intuition but I had said over the course of the week I had a feeling something was really wrong, and this wasn’t just a virus.”
Grace was admitted to Kilmarnock's Crosshouse Hospital where puzzled medics put her through a range of tests, including an MRI scan to check for a post-viral infection they feared was in her spine or hips.
But after five days in the Ayrshire children’s unit, she was sent to a specialist neurology team in Glasgow where scans and a lumbar puncture revealed her nerves were damaged.
Shona said: “At Crosshouse, she didn't want to sit up or walk, her coordination was poor and her hands were shaky.
“When made to walk, she was really unstable and in a huge amount of pain.
“She was refusing to take medicine, or eat or drink anything substantial.”
Grace, who was supported by dad Alistair, 38 and big sister Evie, 7, spent weeks in hospital receiving treatment.
Grace was fed and given medication through an NG tube; was given various nerve painkillers and also a course of immunoglobulin, a form of blood plasma transfusion used to boost the immune system.
She was finally discharged on March 28 and only had the strength to be able to walk across the living room.
Shona said: “Grace is truly amazing, she has come on leaps and bounds.”
Shona has praised the army of NHS staff who helped treat her daughter, with the youngster being seen by nine departments who ensured no stone was left unturned.
She added: “The paediatric neurologists at Glasgow were amazing with numerous visits a day sometimes just to see how Ali and I were.
“The nurses and nursing assistants were incredible, they would give me hugs and late-night talks when I needed a bit of support.
“The physios, occupational therapists, speech and language therapist and dieticians were brilliant and made sure their visits were fun which Grace loved.”
Grace also visited the medicinema with her family where she was able to watch films and get some reprieve from daily treatment.
Shona has also praised staff at Crosshouse and Glasgow for providing her with toys and time in their play rooms.
Shona added: “The care Grace received is something we will never forget. The NHS is truly amazing and something that should be cherished.”
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