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.
“If I’ve passed on muscular dystrophy, I can’t feel guilty – we don’t have time for that,” says former body piercer Israel, who lives with Shyvana in Hamilton, surrounded by his extended family.
“I need to get busy advocating for my daughter and looking for answers.”
As teenagers, Israel and his younger brother Sam were diagnosed with the same cancer within 24 hours of one another. “It was me first and then Sam the next morning,” says Israel.
“I still remember us all standing in Starship and my mother going white when she was given the news.”
Both Israel and his brother Sam bravely fought cancer as teenagers.
Israel was 16 at the time and had suffered chronic headaches for about eight months. He was diagnosed with a nasopharyngeal carcinoma in his head.
“Almost overnight, I lost 25kg and my weight dropped to 40kg,” he says. “I eat like a horse now, but I’ve never been able to put the weight back on.”
His brother Sam, now 28, was diagnosed with the same cancer at 15. The pair missed a year of college and spent months having treatment side by side at Auckland’s Starship Hospital.
“We both went back to school and were treated like golden boys because we’d cheated death,” recalls Israel.
He may have beaten the cancer, but for the next 10 years, Israel began to suffer pains and fatigue in his arms, legs, neck and back.
“I knew something wasn’t right,” he says. “I could feel myself getting weaker by the day.”
For more than 10 years, he sought medical help but was told the symptoms were the result of crushed cranial nerves from the cancerous tumour and subsequent treatment.
“I tried physiotherapy, I tried massage, I tried everything, but I was in agony,” he says.
“The doctors put me on hard-core painkillers, but it meant I struggled to get to sleep at night and I could barely get out of bed in the morning.”
It wasn’t until Israel began to seek help for his daughter’s frozen face and delayed milestones that his family came across a checklist for muscular dystrophy. “I read the list of symptoms and thought, ‘That’s me!'”
Israel has been Shyvana’s full-time caregiver since she was eight months old.
“She’s a beautiful child and she’s softened me up a lot,” he says, producing a lunch box and handing her snacks in zip-lock bags.
“People say I’m a good father, but I’m not sure about that – I just try to do my best.”
Life has dealt Israel a tough hand. After surviving cancer, the pain and fatigue of undiagnosed muscular dystrophy led him to dabble with drugs and hang out with gang members.
He says he has now put all that behind him to focus on his future and that of Shyvana. In recent years, he’s returned to his Christian upbringing. A tattoo on his arm quoting the Book of Proverbs reads, “A man of knowledge uses his words with resolution and understanding. A man of understanding is even-tempered.”
“I have a temper and that is a reminder every day to stop and use my words wisely,” he explains. Across his neck is a commanding tattoo of Christ, the Holy Spirit and the Father.
Although there’s no cure for muscular dystrophy, Israel is awaiting the results of tests for Shyvana – and he knows that knowledge will provide some choices for him and his daughter. A close-knit pair, they take each day as it comes.
“Despite everything, I think I’m the happiest I have ever been,” he says. “I’ve been blessed with a beautiful and happy child, and she means the world to me.”
