Fundraiser for Ethan

Dianne Dempsey | Bendigo Weekly | 21-Feb-2015

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TROUBLED TIMES: Ethan Taylor. Photo: Andrew Perryman.
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It’s hot and Ethan, 12, and Lochie, 10, are sheltering in the shade of a tree at Lake Weeroona with their mother Angela Taylor.

We’ve come to talk about Ethan and the fundraiser Angela and her friend Carolyn O’Sullivan are organising.

Ethan suffers from severe autism and muscular dystrophy.

But Ethan is not a sick boy, Ethan is primarily a boy, a boy who is trying to keep his head above the rising tide of his illness.

Ethan is also photo-phobic. He hates cameras, but in repose Ethan has a beautiful, lightly freckled face. But too often the little face is rippled with pain.

 “Some people are lucky,” Angela said, in what must be the understatement of the year.

“You see some people and they have a charmed life.”

No such luck for Angela and Co.

Ethan’s autism is so severe that he refuses to speak to people. “He will talk at home, Angela said. “But not to other people.”

Angela spent four years talking to paediatricians about Ethan’s autism but that still didn’t explain why her boy couldn’t walk properly or climb stairs. When he was six years old she said to a doctor.

“Look at him, other kids his age can walk and run, but why can’t Ethan?”

“It took one simple blood test,” Angela said.

“They told me he had muscular dystrophy. It was devastating. I’ve had to watch my boy as he slowly loses his ability to move.“

Muscular dystrophy is a disease that affects the muscles of the body. It takes many forms and Ethan has one of the more virulent kinds. The “Duchenne” form of muscular dystrophy only affects boys.

One day it will stop Ethan’s heart from beating. Because of the constant use of steroids, Ethan’s bones have become brittle.

When Ethan coughed last year, he fractured the bones in his lower spine. That was it for him. After that, he refused to walk anymore.

“Some children pass away when they are ten years old. Others in their late teens or early 20s. It depends on Ethan’s heart. It is a fatal disease,” Angela said.

“At first I tried to make plans but you can’t do that. It’s hard but once I made the decision to live day by day it became easier.”

Angela’s husband died 10 years ago. She lives in a rented property in Kangaroo Flat and has been on a waiting list for a house which can accommodate people with a disability. But the list is long.

Angela has to take Ethan to the Royal Children’s Hospital on average once a week.

“By the time you pay for the ETag, the parking, the petrol, each trip can cost $100,” she said.

Angela doesn’t get out much. She’s nearly 41 and she’s tired. Her favourite way to relax is to watch sport on the telly.

“I just love it,” she says.”I love footy, cricket, the lot.”

And then there’s Lochie. Angela has applied for some respite hours, just three hours a week, so she can spend time with Lochie. But Angela has been placed on another waiting list, this time for respite care. Then again, Lochie is used to being second banana. He is patient and waits for what time is left for him.

Carolyn, Angela’s friend plans to organise a silent auction in three months time for the family. Details of the auction and the date will be announced soon. 

 

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