Siblings settle in a new 'family'

By Roger Moroney

Life for brother and sister Charlie and Christine Wallace of Napier has never been easy.

Both were born with a rare genetic disorder called Behr Syndrome - a neurological condition which affects vision, causes loss of body control and co-ordination and over time can cause rapid involuntary eye movements and progressive damage to nerves.

For the siblings it emerged in early childhood and has progressively worsened.

Both are now in their early 30s and had been cared for by whanau until their mother became ill and finally passed away.

Charlie has some independence and lives alone in a Housing New Zealand home in Marewa.

Christine also lives in Marewa in a residential facility run by CCS. She has a more aggressive form of the disease and can't live independently.

Both are current clients of Realpeople@mosaic, the Presbyterian Support service which provides community-based educational day services for people under 65 with a disability.

They both relish being part of the Mosaic family as it gives them the opportunity to feel like part of the community.

A common theme emerges from the lives of Christine and Charlie.

They experience difficulties with social isolation, general everyday living and financial hardship.

Charlie has had to move house frequently in recent times, and while he is able to use a mobile scooter and a portable walker he does have a degree of independence. However he is isolated, and said he would like more social interaction.

"I get bored quite a lot and that has led to me sometimes drinking, and that's caused problems in coping with the frustration that goes with being disabled," he said.

"Its hard coping with my disease. I've had it since birth and had lots of time in hospitals, however compared to Christine, I have a less severe version, so far, and I can have a more independent lifestyle. Being on my own and being hard up is what sucks the most. I usually only have one meal a day from meals on wheels, but if I manage my money well I sometimes get a feed of fish and chips as well."

He said he had been burgled several times over recent years and that he had recently been deliberately knocked off his mobile scooter in the street.

But he is not one to complain and he is focused on getting out and about as much as he can.

He enjoys his time at Realpeople@mosaic.

"It's a great place for socialising, getting skills, and helping me to participate more within the community".

Christine is a year older than Charlie and said she had different symptoms.

"Behr Syndrome has affected me differently so my journey has not been the same," she said, adding she had gone through quite a few different living arrangements.

There had been some "ups and downs" along the way.

"I was living at Realpeople@rowan several years ago when the building was flooded and had to be rebuilt. I was shipped off to a rest home in Dannevirke because there was nowhere else for me to go where I could receive the care I need. That was hard, being isolated without people of my age."

She said she and Charlie were the only ones in the family who inherited the disease.

"None of the others got it. You have to get used to life the way it is otherwise life isn't bearable."

- Hawkes Bay Today

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