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Home / New Zealand

Bone disease makes boy a prisoner in someone else's home

Corazon Miller
By Corazon Miller
Reporter·NZ Herald·
28 May, 2017 05:00 PM4 mins to read

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Andrew Balderston has one of the most severe cases of brittle bone disease in New Zealand. His family have been on the social housing register wait list for 10 months in the hope of finding a more suitable house.

For almost 10 months Emma and Rory Balderston have been waiting for a home - every day is another one they fear their son, who has brittle bone disease, could be fatally injured.

Unable to walk, Andrew is carried up and down 10 concrete stairs each day - his parents fearful every step of the way they could slip, fall and drop him.

Currently they live in a four-bedroom house in Blockhouse Bay, with two other children and Rory Balderson's parents.

Andrew, 9, the middle child, has a severe form of osteogenesis imperfecta, a genetic disorder that results in bones being so brittle sneezing can break ribs.

In June 2016 they applied for a modified house suitable for Andrew's needs through the Ministry of Social Development.

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They have been on the register since September, but despite calling each month have been given no clear indication of when a home would be available.

"When we first applied, they said seven months max, then we got bumped again," said Rory. "We knew there would be a bit of a wait, but we didn't expect it to be this long."

MSD national commissioner Kay Read said because the family needed to be close to hospital "matching them to a suitable property" may take longer.

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"We are conscious of the severity of their son's condition and the temporary nature of their current accommodation, and we are working closely with housing providers to find a suitable place as quickly as possible."

Rory Balderston's parents had hoped to sell their home and move to Feilding, but were unable to do so until a more suitable place had been found for the family.

Senior co-ordinator for CCS Disability Fiona MacDonald said this was a common situation and often people with a disability just had to "make do" due to a lack of accessible homes for sale or for rent.

In March 2017 4865 people were listed as being on MSD's social housing register.

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The Balderstons said paying for their own rental was not an option as suitable properties were around $1000 a week - $50 more than the $950 they received weekly.

The Balderston family, Emma, Andrew, 9, and Rory have been on the social housing register for the last 10 months. Photo: NZH/Nick Reed.
The Balderston family, Emma, Andrew, 9, and Rory have been on the social housing register for the last 10 months. Photo: NZH/Nick Reed.

Because both were on a benefit purchasing a house was also out of the question.

Emma Balderston was unable to work as she needed to care for Andrew and her husband had until the last few years been working, but severe asthma and issues with his oesophagus saw him regularly in and out of hospital.

Meanwhile, they were coping as best as they could, but the accessibility issues had severely limited their lifestyle and their son's independence.

Emma Balderston said tripping on these stairs with him in her arms could have disastrous consequences.

"Safety-wise, it's getting to the point where I don't want to carry him out of the building anywhere."

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Rory Balderston was once dropped by ambulance officers on the stairs.

"But that's far better than Andrew," he said. "Dropping any child down those stairs is bad, but he would not survive it."

So the family, including 16-month-old James, and Tessa, 13, spent a lot of time cooped up in the modest lounge.

"We have to think twice: 'Do we really need to go out?' Because that would mean taking him down those stairs again. He's really a prisoner in a house, that's... well not even his own home."

Inside Andrew is limited to crawling around the lounge as his power chair is too heavy to get into the house.

Rory Balderston said when their youngest comes out to play, Andrew had to go into a playpen as the toddler did not understand how fragile his big brother was.

"He doesn't know, he could push him and that'd be it," he said. "So Andrew goes in a baby's pen that he likes to call his fort."

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When he was not watching shows, Emma Balderston said her son enjoyed reading.

But she said a modified home with room for Andrew's wheelchair would make a world of difference to her son.

"It would be nice for him to have that independence."

When the Herald met Andrew he appeared pretty happy, sitting on a chair and kicking his feet under the table as he watched one of his favourite shows on YouTube Kids.

However, as contented as he seemed; his eyes lit up at the prospect of a new house.

"Are you going to get me a new house?"

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