Teen girl turning to stone
Racheal Steiner-Hooker isn’t yet 16, but she lives with the aches and pains of a 70-year-old.
A collection of autoimmune diseases means her organs are progressively weakening and hardening.
Racheal was diagnosed with mixed connective tissue disease including Raynaud’s, lupus, rheumatoid arthritis and scleroderma in June 2017.
Scleroderma, an incurable disease, is sometimes described as turning bodies into stone.
Racheal has been sick most of her life, but it’s taken 15 years to diagnose.
Kids used to think she was faking the steady stream of slings, crutches, aches and pains she would turn up to school with.
‘‘I would miss a lot of school. It was so hard, I was always bullied,’’ Racheal said. ‘‘I’m actually kind of happy I know what it is now. I’m a little bit relieved, you know, knowing that it’s not just my mind playing games.’’
But there are plenty of ups and downs.
‘‘It’s hard having all of [the illnesses]. Being one of the ones to actually get it is kind of scary.
‘‘At first I was kind of confused on what it was. I did my own research at school.
‘‘After a while I was like, this is going to take a lot of getting used to. And it did. I’ve kind of gotten better. But then I started taking a little bit of a downhill.’’
While treatment and diet can help slow the disease and manage the symptoms, there is no cure.
On bad days, all she can do is sleep. Even eating is unpleasant, as her stomach is badly affected.
‘‘When I’m actually well I try and make the most of it. I really like school. It sucks that I don’t get to go there.’’
It can be a lonely illness and Racheal hopes to meet someone else going through it.
Her mum – a solo mother of three – Ange Hooker, quit her job as a nurse last year when Racheal became too sick to go to school every day.
‘‘It works a lot better, but financially it’s difficult,’’ Hooker said. ‘‘If she goes to school for a full day, she’s exhausted for the next two.
‘‘It’s very rare, we haven’t found anyone in New Zealand her age with it yet,’’ he mum said.
‘‘The symptoms she’s got you would expect to see in a 60 or 70-year-old person . . . she wants to be a normal teenager.’’
But she’s an inspiration, Hooker said.
Racheal has twice cut off her hair to raise money for charities.
And she passed NCEA Level 1, despite missing almost the entire last two terms of school in 2017.
‘‘She’s such a beautiful girl, she’s so kind and caring and very, very giving. She’ll put others first before herself.
‘‘I think she’s being pretty brave, actually.’’
Anti-malaria medication and a strict diet are helping slow down the unforgiving diseases.
‘‘I’m actually kind of happy I know what it is now. I’m a little bit relieved, you know, knowing that it’s not just my mind playing games.’’ But there are plenty of ups and downs.’’
‘‘With malaria you get painful joints and muscles and so this drug works the same way. It helps slow the progression of the disease.
‘‘It’s really difficult to watch her go through it and know I can’t fix it completely.’’
With the help of a Givealittle page, Hooker and her three children will go on their first big holiday this year.
The donations and support have been humbling, Hooker said.
‘‘She needs that family time and to make those memories.
‘‘We don’t know what the longterm outcome is for Rach. She’s really struggling at the moment . . . It’s so rare and it’s so debilitating.
‘‘You don’t expect it to happen to you or someone in your family.
‘‘We’ve just got to take it one day at a time and not look ahead too much.’’
A Givealittle page, givealittle.co.nz/ cause/smilesforrach, has been set up.