Boy battles rare illness

STICKING TOGETHER: The Pavihi-Kumitau family are staying strong in their search for answers on son and brother Christian’s rare condition. From left Madison, 3, Riley, 8, mum Sifa, and Christian, 10.
MARCIA JESSEN/Manukau Courier
Ten-year-old Christian Pavihi-Kumitau wants more than anything to walk again. His mother just wants answers.
The Mangere boy has syringomyelia, a rare condition that affects his spinal cord and means he has a 10cm fluid-filled cyst on his spine that cannot be removed.
The condition has left him paralysed from the waist down and wheelchair-bound.
New Zealand has no specialists on the condition and to get answers about the disease the family wants to attend the annual Syringomyelia Alliance Project conference in the United States next year.
They estimate they will need to raise $10,000 to make the trip.
“All we know about it is what I have read and learnt myself,” says Christian’s mum Sifa Pavihi.
She says the conference would fill in the gaps and answer the questions that keep running through her mind, especially about what caused her son’s condition.
Christian walked normally until he was five. Then his teachers noticed he was struggling to get off the mat and tripping over himself.
He was diagnosed with cerebral palsy but the family didn’t believe that so they sought a second opinion. After consulting five doctors they were told it was syringomyelia.
An operation released the pressure of the cyst on Christian’s spine and he was put on a six-month waiting list for further surgery.
But while he waited he deteriorated. He went from walking to crawling to being unable to move his lower half. His mother swung into action.
“You’ve got to do something when you see your child deteriorating that quickly,” says Miss Pavihi.
She got hold of the surgeon and pleaded her case. Moved by her plight the surgeon scheduled Christian for an operation within a week.
A grommet was inserted into the cyst to deflate it and with intense physiotherapy Christian walked again.
But three weeks later he went downhill. In another operation a shunt was inserted into his spine to drain the fluid and, while that stabilised Christian, he has never walked again.
For the past five years the family thought they were the only ones in the country dealing with the condition.
Now they have found another family in New Plymouth who have a 12-year-old girl with syringomyelia. They are also raising money to attend next year’s conference.
Christian says it is “cool” to meet another kid with the condition and his mum says it helps to know they are not alone.
In the meantime Christian is getting on with life. Like any normal child he loves his PlayStation, Dragon Ball Z and rolling around in the grass with his brother Riley.
And while Riley has become Christian’s legs he still looks for the day when he can use his own again.
Donations to the family can be made into the Syringo account held at TSB Bank.

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