A mother who lost her daughter to a severe genetic disorder said she has “so much anger” over spinal surgery waitlists.
A mother who lost her daughter to a severe genetic disorder said the recent initiative from the Department of Health to offer spinal surgeries to children abroad is"too little too late".“She battled time and time again,” she said. “We had five episodes where Daisy was given pretty much 24 hours - and she fought through.”
She also had a mitochondrial disease, needed non-invasive ventilation and was “wholly incapacitated”.Like other parents and their children, Daisy and her family had spent years waiting for spinal surgery.“For the last year, Daisy had horrific bowel issues," she said. Daisy should have had surgery three years before her death, according to Lynn - but due to the long wait they already had, she was no longer a candidate for anaesthetic.
“There is no specific end-of-life palliative care for children who are choosing to die at home,” she said.
Children' S Health Hse Spinal Surgery
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