Battle to keep fragile boy safe
We didn’t have time to think. We researched it on the internet and just tried to save him.
Asami Wisjnuery Mother
Before 2-year-old Ryuki Wisjnuery was born he had fractured a bone in his leg.
As delicate as a china doll, Asami and Leyno Wisjnuery’s fourth son was born with Osteogenesis Imperfecta, also called brittle bone disease.
While most babies are plonked on the floor to play, move and explore, Ryuki spent most of his first year in a padded crib.
Shocked by the diagnosis, three days after the birth by caesarean, Asami Wisjnuery said she and her husband had no time to come to terms with their baby’s predicament.
‘‘We didn’t have time to think. We researched it on the internet and just tried to save him.’’
Wisjnuery came to New Zealand from Japan to study English. She met her Indonesian husband while the pair were students at Christchurch Polytechnic.
They married and decided to build a new life in Christchurch.
Since Ryuki’s birth, learning to speak up to protect their son had been culturally challenging, Wisjnuery said. ‘‘Every time I had to be strong and I had to protect him . . . but I had to tell them nicely . . . and it is difficult.’’
While there was no cure for the disease, treatment with an infusion of medication every four months and surgery to straighten and strengthen his bones had been effective. During an operation in August last year doctors inserted pins in to his femur bones.
Since then the family has delighted in watching Ryuki gain strength enough to crawl and play. But they must remain vigilant.
‘‘We never ask anyone else to cuddle him, we are so afraid.’’
There were no guarantees Ryuki would walk, she said.
Another surgery is scheduled for next month to straighten and strengthen his shin bones. The procedures will continue until his teenage years. Although the family hope to see Ryuki walk, they know he will need a wheelchair.
A special powered wheelchair on order from the US would allow Ryuki to explore and play.
Wisjnuery said the cost to have their modest home altered to accommodate a wheelchair would be prohibitively expensive. Quotes from builders exceeded $50,000 just to have the internal work done.
While some money would be available through disability support service Enable New Zealand, the family would need to find the rest. Encouraged by her Kiwi friends, Wisjnuery set up a fundraising page in February.