AFTER going through 18 surgeries during the last 17 months, four-year-old Lilly Antonelli, of Redland Bay, had two wishes.
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Her mother Michaela Antonelli could not help with the one – which was for her to be better and not be in pain.
Lilly’s other wish – to meet Captain America – came true on Monday due to her mother’s efforts.
It was all worth it when Mrs Antonelli saw the smile on her daughter’s face and heard Lilly say she “had the best day ever, ever, ever”.
The disorder is rare, especially in children, and very difficult to diagnose.
It occurs when part of the brain descends out of the skull into the spinal area, which results in compression of parts of the brain and spinal cord and disrupts the flow of fluid around the brain.
Lilly has had a shunt inserted to drain the fluid around the brain.
Mrs Antonelli said they got home from their latest stay in hospital about three weeks ago.
“Lilly had surgery to move the shunt,” she said.
She has had complications since the shunt was inserted and their latest stay in hospital was four weeks.
Lilly was introduced to Captain America last Easter at Lady Cilento Children’s Hospital.
Since looking at photos of that occasion, she has become fascinated with Captain America.
“A volunteer at the hospital asked Lilly what she wished for,” Mrs Antonelli said.
“She said she had two wishes. One was to get better and not have any pain and the other was to meet Captain America again.”
Mrs Antonelli said as their four-week hospital stay was coming to an end, she asked if Captain America could come to the Grasshoppers Early Learning Centre which had helped her family and raised money since Lilly’s diagnosis.
“They have given so much to us. It is wonderful to be able to give something back to these kids (at the early learning centre).”
Lilly has a specialist appointment this week and the family will then determine what the next step is in her treatment.
“In 17 months she has had 18 surgeries, 29 MRIs (magnetic resonance imaging) under general anasthetic and about 60 outpatient appointments,” Mrs Antonelli said.
She said the estimated cost of parking while at the hospital was about $9000.
