Road to Recovery for Myasthenia Gravis Disease Patient

July 12, 2013

ENYA Dakin was just four days into the new school year when her body mysteriously started attacking itself from the inside.

First the 13-year-old started falling over, then her eyes began to droop and next she stopped being able to use her mouth.

“It was so scary. I couldn’t feel my legs,” Enya said.

Initial scans suggested a brain tumour but tests at the Royal Children’s Hospital led neurologists to diagnose Enya with myasthenia gravis.

The rare autoimmune disease provokes the body into making antibodies which interfere with the transmission of messages from nerves to muscles, but its cause is unknown.

The RCH treats two to four children each year with the disease, but Director of Neurology Andrew Kornberg said he had seen none as sick as Enya.

Further tests revealed she had an 8cm long tumour on her thymus gland, a small organ under the breastbone and between the lungs, becoming the first child in about 60 years to have the disease caused by a tumour.

But the day after keyhole surgery to remove the benign tumour, Enya was rushed back to intensive care when her lung collapsed and she was unable to breathe.

She was stabilised, but the same thing happened a week later when intensive care staff needed to crack open her chest to get her breathing again.

After five weeks in intensive care on a respirator, with parents Franca and Paul by her side, Enya slowly regained strength and relearned how to walk and breathe on her own.

She has returned home and is now back at school.

Enya said she felt “80 per cent back to my old self”, and was looking forward to walking around school with her friends at lunchtime and playing basketball again.

“I’ll never leave her by herself now,” mum Franca said.

“The hospital staff are unbelievable. They are genuinely concerned about the kids, and without them I wouldn’t still have her.”


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