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‘Please help fix my face’

Ashleigh Fenn talks about tubes, takeaways and bilateral jaw replacements from her hospital bed.

Ashleigh Fenn would kill for a Subway – a six inch meatball marinara or a sweet onion chicken teriyaki.

“I wouldn’t be able to make up my mind because I haven’t been able to eat a sub for four years.”

Ashleigh has been enduring four years of hell. She can open her mouth only one centimeter, so she can’t eat, has lost 30 kilograms in six months and spends most days in bed.

“I can’t eat so I have no energy and I get dizzy standing up. And you can’t be bothered when your life revolves around pain. It’s on a scale of eight out of ten most days.”

Ashleigh needs a bilateral jaw replacement – the discs which enable the jaw to function, to open and close, aren’t doing their job. And it will require $50,000 worth of private surgery to give Ashleigh a quality of life.

It is money she doesn’t have, so she has opened a ‘givealittle’ account.

Until last week she had her dietary supplement shakes. “They don’t taste very nice. And now I have a nasogastric tube.” The tube carries food and medicine through the nose to the stomach. “All I really want is a Subway.”

She’s sitting up in a Tauranga Hospital bed this week talking to The Weekend Sun about tubes and takeaways and bilateral jaw replacements.

She can’t chew and, if she swallows, it can be very painful. She’s talking though. “Yes, but it’s hard. I really have to project my voice because it involves not moving my mouth much.”

Go back four years. “I woke up one day and my jaw was locked closed. I couldn’t open it.” The small fibrous discs around which the jaw operates became displaced in Ashleigh’s face. It’s called a temporomandibular disorder.

“And because of that I now have osteoarthritis on the left side of my jaw. So what I need is a bilateral jaw replacement – kind of like a hip or knee replacement – on both sides of my face.”

The public health system funds just two such operations a year. “But there’s no funding for me because I am just 20 and they would prefer to wait until my late 20s.” But after assessing her pain and weight loss, her specialist has told her that it needs to be done. “An operation this year would be a dream come true.” However the joints need to be made-to-order in America and it takes three months.

“But that’s okay, because it has already been a long four years.”

In the meantime this 20-year-old healthcare assistant has had to put both her job and nursing degree on hold. “It’s made living very stressful.” And her husband is putting in the extra hours. “Financially, it’s become quite a big burden.” And that’s why Ashleigh’s is hoping for a hand up.

“People are very understanding when I tell them about my problem. Then when you tell them you can’t eat, they think you must be going insane kind of thing.”

To help Ashleigh get her jaws working go to givealittle.co.nz/cause/ashleigh-needs-a-new-jaw

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