Real Life

Housing crisis forces family with special needs child to live in one room

In spite of working hard, this family is sliding into poverty.

It’s winter, so Michael and Priscilla Foot have every reason to worry about their four-year-old daughter Briana.

Born with a rare genetic condition, Peroxisomal Biogenesis Disorder – Zellweger Spectrum, which causes a complex set of disabilities, the little girl has limited vision and hearing, liver failure, frequent seizures and a feeding tube in her stomach. She can’t stand or sit without support, or walk, and requires 24-hour care.

“Briana doesn’t really sleep so with no more than four hours’ sleep most nights ourselves, it’s a struggle,” says Priscilla (35).

Michael looks after their daughter while Priscilla works at an industrial plant an hour’s drive from their rented home. She does 12-hour shifts in order to cover the significant costs of having a disabled child.

They’re desperate to move into a purpose-built home with the facilities they need for Briana but, with little state funding available to them, that day looks increasingly far off. Meanwhile, their rented property – which is set low beside the railway line – is seriously damp, and mould covers most of their belongings. With only a single electric heater for warmth, the family sleeps together in the lounge.

“One of us has to be awake for Briana and this is the driest room,” says Michael (33), who recently injured his back lifting his 25kg daughter out of the bath.

The Foots’ difficulties have only increased since Briana’s birth. Following her diagnosis – which took over two years due to the rarity of her syndrome – they moved to Australia, hoping to find the best care possible.

Michael worked on a drilling rig and Priscilla cared for Briana, but things didn’t work out. With their finances at breaking point, they moved home, and back to Briana’s care team at Starship Children’s hospital.

Michael tends to Briana in the lounge, which is also where the family sleeps.

With nowhere to live they were forced to move in with Priscilla’s sister and her family in Te Kauwhata, meaning Priscilla had a two-hour commute to her then job in Albany. Nine people lived in the tiny, cramped home.

When Briana’s health took a turn about 18 months ago, Michael and Priscilla were told to prepare an end-of-life plan for their little girl. It was then they received a phone call with another bombshell.

“It was my sister, and she said that the house had burnt down. Everything was gone – including all of Briana’s equipment,” says Priscilla. “It was such a terrible shock, and we were left with practically nothing.”

They applied to Housing New Zealand for emergency accommodation, but because Priscilla had a good job there was nothing the department could do for them.

“It feels as if we’re penalised for working to try and support ourselves – and for being married. If we split up we’d get a lot more help!” says Michael.

Briana’s health improved a little and she has been relatively stable for the past few months, but there’s always a packed suitcase sitting in the hallway of their Huntly home, ready for an emergency dash to hospital.

“I also carry copies of all her medical notes everywhere we go because the condition is so complex and unusual,” Michael explains.

He and Priscilla are struggling through the colder months as Briana is vulnerable to chest infections and frequently ends up on a ventilator.

“We’re worried sick about the damp and mould here. We spend hours each day trying to clean it, and dry the place out, but with little success.”

When he isn’t busy caring for his daughter, Michael contacts anybody who he thinks might be able to help his family into a warm, healthy home.

“Ideally we’d like to build but even getting a property we can modify [for Briana] looks more and more unlikely,” he says.

The home that burnt down.

Michael and Priscilla are both ex-military and admit they are bewildered at the situation they’ve found themselves in.

“We have worked hard and contributed to society and now, with our little girl who has such great needs, we can’t believe how little practical help and state support is out there.

“Our Starship social worker recently heard someone in a similar situation to ours describe it as ‘a gentle slide into poverty’ – and that’s exactly right.”

Michael and Priscilla have set up a Givealittle page to help raise money for a deposit on a house, and in the meantime say that they will continue trying to give Briana the care that she needs.

“Everything we do is with her best interests at heart,” says Priscilla. “Her life expectancy is limited and sometimes we look at her and think the main reason she is still here is simply the amount of love we have for her!”

Words: Louise Richardson

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