Their close bond keeps them strong
Inseparable father-daughter duo Israel and Shyvana O’Dea communicate using a secret language of glances, tiny gestures and whispered words.
“She’s so much like me, it’s crazy,” says the 29-year-old solo dad, pulling his daughter onto his lap and smoothing back a strand of wayward hair. “Small but full of attitude – and going at life with everything she’s got.”
But cruelly, Israel and his ethereal-looking girl, who turned five in April, share something more sinister than their small stature and a zest for life.
After surviving a rare form of cancer as a teen, Israel was dealt a double whammy when he was diagnosed last year with the incurable genetic disorder muscular dystrophy. He has one of the most common forms, facioscapulohumeral muscular dystrophy, characterised by muscle wasting and weakness primarily in the face, shoulder blades and upper arms.
Now his precious daughter is exhibiting similar symptoms and doctors are carrying out genetic tests to see if she’s inherited the condition.
Closer in size to a three-year-old than a little girl who has just started school, Shyvana also has moderate to severe hearing loss and has worn glasses for the past year.
Although she follows Israel’s every move with her eyes, the muscles in her face are unnervingly still. Her emotions often go unnoticed to almost everyone except her father – for Shyvana, a smile is a tiny crinkle in the corner of her mouth and with sadness comes tears, but her beautiful face remains immobile.
This story is from the June 25 2018 edition of Woman’s Day Magazine NZ.
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This story is from the June 25 2018 edition of Woman’s Day Magazine NZ.
Start your 7-day Magzter GOLD free trial to access thousands of curated premium stories, and 9,000+ magazines and newspapers.
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