Reno project
Elizabeth Perrone didn’t want to have to ask for help for her chronically ill daughter. Now that she has, she’s overwhelmed by the outpouring of love and support from the Nelson community. Jonathan Carson reports.
Bernadette Perrone likes to play games and make art.
She likes her pet rabbit, Angel. She enjoys reading, but only sometimes.
She has dreams of starting her own cafe; one that serves gluten and nut-free food. Food that she can eat.
‘‘I’m still learning to cook,’’ she said. ‘‘I’m not very good at it.’’
On the surface, Bernadette is a typical 13-year-old girl.
But there’s a lot that people don’t see.
Bernadette was born with Ivemark syndrome, a condition that affects her organs, bones and arteries.
Her mother Elizabeth Perrone said it means that Bernadette’s organs are ‘‘upside down, too big, too small, deformed ... all in the wrong place’’. She’s in constant pain and struggles to sleep.
She also has serious food allergies and an auditory condition that means it’s difficult for her to hear and understand words.
Bernadette has two satchelsized bags of medicines which she has to take at set times each day. There are too many to list.
And she has to undergo a onehour medical procedure after dinner each evening in the poky, damp, mouldy bathroom in her family’s Motueka St home.
FINANCIAL STRUGGLE
Elizabeth said the bathroom was in desperate need of an upgrade.
‘‘Because of Bernadette’s health issues the bathroom and the toilet is a big deal,’’ she said.
‘‘We have to be even more careful with hygiene for her.’’ But money is tight. When Bernadette was younger, Elizabeth had to stay home and care for her full-time.
‘‘So we weren’t able to save and we weren’t able to make alterations or fix up our home. You can only do that for so long.
‘‘We got to the point where even though Bernadette needs me at home she equally needed things at home to be done that cost money.’’
So Elizabeth went back to work. She works as a cleaner five days a week, morning and evening. She was working seven days, but her health suffered.
Her husband Francis works full-time as a carer at NZCare Disability. And their five other children, aged 18 to 24, help where they can. But the family couldn’t get ahead.
‘‘All the whiteware blew up so we had to replace that,’’ Elizabeth said.
‘‘The van is on its last legs and that’s costing us thousands. Every time I get a bill cleared another pops up. Even Bernadette’s medications, they’re not actually free.’’
She didn’t want to get another mortgage or loan as she didn’t know if they could pay it off. Elizabeth said she reached ‘‘breaking point’’.
ASKING FOR HELP
That’s when she went to Helen McDonnell at CCS Disability Action in Nelson and, for the first time, really asked for help.
McDonnell wrote a letter to Mitre 10 Mega marketing coordinator Murray Leaning.
She hoped he might take it on as one of Mitre 10’s Helping Hands projects.
Leaning was moved by Bernadette’s story, but it didn’t fit the Helping Hands brief.
‘‘It just struck me as a parent,’’ Leaning said.
‘‘So I just did a bit of an emotional dump on Facebook and it just went crazy.’’
He put the call out for a plumber, electrician, gib stopper, builders and handy people to help renovate the bathroom.
The story of Bernadette and her family struck a chord.
Help has poured in from all corners of the community.
Local companies offered supplies, manpower and money. Others have said they will give Bernadette a makeover and put on a barbecue for volunteers. There are too many to list.
Elizabeth has to fight back tears when she thinks about the level of public support. ‘‘I feel like I can breathe,’’ she said.
‘‘It’s such a relief. You don’t expect people to do that, but we’re so grateful that they are.
‘‘Everyone wants the best for their kids and I’m not afraid of hard work, I don’t expect to win Lotto.
‘‘So it’s really hard to ask for help, but now I have and everyone’s just so incredibly generous.
‘‘You hear all of the bad stuff on the news and the radio and all the horrible things in the paper and then you have all this loveliness poured out – it’s just awesome.’’
Leaning’s hopeful that the volunteer renovation project will expand beyond the bathroom.
Depending on the amount of community support, the Perrone family’s entire house could be in for a spruce up.
Elizabeth said they had hoped to some day renovate Bernadette’s bedroom.
Leaning said the Perrone family’s situation ‘‘come about through absolutely no fault of their own’’.
‘‘They are good, honest, Kiwi battlers, who kept their heads down, loved and raised their family, preserved their privacy and independence, and just fell into the cracks,’’ he said.
‘‘This is all about the old Kiwi community looking after one another – looking after your neighbours, when they are sick, or overwhelmed, or just need support.’’
Leaning said he would arrange a time for the project once council consents were processed.