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| Ashley Earl-Goulet, pictured with mum Judith, has has recovered thanks to more than 600 blood donations |
Ashley Earl-Goulet, 14, is the only child in the South Island and one of just a handful in New Zealand with myasthenia gravis, a long-term neuromuscular disease which weakens muscles – most commonly in the eyes and face.
Ashley's treatment included a blood "product" nick-named "go go juice" by health workers
and patients. It was extracted from the blood plasma of hundreds of donors.
After two years of blood transfusions, strong medications and surgery, the Timaru Girls' High School student is now symptom free.
She began using an eye patch as her eyelids became heavy and difficult to keep open.
"I thought it's better to just have the patch; I would use the elastic to keep the other eye open so I could actually see."
The muscles around her mouth then started to weaken and she had trouble swallowing.
"I couldn't chew without spilling half of my food."
Mum Judith Earl-Goulet said a battery of tests and scans over three months finally revealed Ashley had myasthenia gravis.
Treatment started immediately with monthly intravenous immunoglobulin infusions and, in September last year, the teenager had surgery to remove her thymus gland from between her heart and spine.
The surgery resulted in remission of the disease in 25 per cent of all cases, but it was too early to tell if it had worked for Ashley as she was still taking medication, her mum said.
Her last blood infusion was in March and her medications, including steroids, were being reduced gradually.
Earl-Goulet said she and her husband were not eligible to donate blood themselves as they had lived in the United Kingdom during the time of mad cow disease, but they were incredibly grateful for the donations that helped treat their daughter.
"Never doubt what a difference you are making."
Ashley was organising a mufti day at her school to raise funds for research in to myasthenia gravis.
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