Mother dying of ALS far from home
Dad, kids trying to cope after woman's condition worsens on trip to say goodbye to family

Sandra McCulloch, Times Colonist
Published: Wednesday, October 10, 2007

Johnny Huynh calls his dying wife, Ngo, by telephone each morning to listen to her breathe.

The 39-year-old mother of three young boys is unable to speak because she's on a ventilator in Cantho, Vietnam. The Huynh family travelled there from Victoria in April on what was supposed to be a two-month stay for Ngo to say a final goodbye to family.

But the long flight took too much out of Ngo, who is terminally ill with amyotrophic lateral sclerosis (ALS, sometimes called Lou Gehrig's disease). ALS is a progressive, fatal disease caused by degeneration of the nerve cells in the central nervous system. Ngo was diagnosed in August 2006.



Johnny Huynh and sons Ethan, 5, Eric, 10, and Evan, 6, look at a family photo taken in happier times for the Victoria family. Johnny's wife, Ngo, suffers from ALS and remains in a hospital in Vietnam after her condition deteriorated to the point she was unable to travel home.
Debra Brash, Times Colonist

Johnny and Ngo have been married 12 years and both are landed immigrants. The trip was also an opportunity to explore alternative treatments that could offer more hope than the palliative care offered in Canada.

"We wanted to find something to help her," said Johnny yesterday as he sat at the kitchen table of his family's Saanich home.

Johnny took Ngo to a Vietnamese hospital as they got off the plane because she couldn't breathe. Now, the only contact Johnny has with his wife are the daily phone calls where he listens to the sound of her jagged breaths as she cries.

Flying her home with a ventilator and an accompanying doctor would cost an estimated $57,000. Such a financial outlay is out of the question for Johnny, a portrait and wedding photographer who has sold all his equipment.

"I'm dead broke," said Johnny. "For the last eight months, I've relied on friends to loan me some money. I work on and off in order to catch up with the mortgage." Medical fees in Vietnam accumulate at $110 a day.

Johnny hates to think of his wife dying on the other side of the world from her family. Ngo did see a couple of Vietnamese family members who visited her in hospital.

"But it's too late for her to say hello to them because they already put her on a ventilator," Johnny said.

Johnny returned with the boys to Canada on Sept. 6 for the beginning of school. It was terrible to leave Ngo behind, said Johnny.

"You have no idea how I'm feeling right now. Every morning I make a phone call back there and I hear her breathing. Whenever she hears my voice or the children's voices, she cries."

Many people who are diagnosed with ALS choose to travel to see loved ones or visit somewhere exotic, said Wendy Magee, executive director of the ALS society of B.C. "On average, when someone is diagnosed, their life expectancy is two to five years but there are no guarantees with anything."

Ngo had been given the green light to travel, said Johnny.

"The doctors said to do whatever we please because [this trip] was her last wish."

It's a very sad case, said Magee. "Here's a family who probably used all their savings to send her to Vietnam to say goodbye and now every day, they have to pay to keep her alive.

"It's heartbreaking. I can't even imagine what the husband and those children are going through."

Bringing her home is Johnny's own wish, even though she's going to die. "Please, bring her home so she can die with her family instead of by herself feeling this loneliness."

Dad, kids trying to cope after woman's condition worsens on trip to say goodbye to family


The situation is taking a toll on the boys, said Johnny. Eric, 10, is having trouble concentrating at school and is irritable. Six-year-old Evan and Ethan, 5, are also feeling the stress in the home.

"When mom was home, mom took care of almost everything," said Johnny. "Now mom's not home and I have to go to work. At about 5 p.m., we all come home together. I make the food and they have to help me out with the cleanup.

"It's hard for them, hard for all of us. It's hard to live without her but I have to get used to it."

The most difficult part of this situation is listening to her voice and listening to what she cannot say.

Johnny has no family in Victoria but a few friends step in to help with child care and prepare meals.

If Ngo can't come back to Canada, Johnny would like to travel back to his wife to be with her "for her last minutes."

The window for Ngo's ability to withstand the trip home, even on a stretcher and on a ventilator, is closing.

"I live in the moment, take life day by day," said Johnny.

Donations to the Huynh family can be made through any branch of Coast Capital Savings Credit Union.



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