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.



http://www.canada.com/victoriatimesc...14444f&k=61143

Dying mom stranded overseas
Husband trying to raise funds to bring mother of three home
Cheryl Chan, The Province
Published: Friday, October 19, 2007

The husband of a dying mother of three who is stranded in a hospital in Vietnam is desperately trying to bring her back to Canada.

"If she comes back, I know she'll die, too," said Johnny Huynh, 43. "But at least she'll die with family."

His wife, Chinh Ngo, 39, was diagnosed in August last year with amyotrophic lateral sclerosis, or Lou Gehrig's disease, a fatal, progressive illness caused by the degeneration of nerve cells.



She wanted to go to Vietnam to say goodbye to her family before she died," said Johnny.

With her doctor's permission, the Victoria couple and their three kids -- Eric, 10, Evan, 7, and Ethan, 6 -- travelled to Cantho, Vietnam, in April. But the long flight took its toll on Chinh, who was rushed to the emergency room on arrival. She has been in intensive care since.

The family stayed with her until early September, when the boys had to go back to school. Now Johnny is trying to bring his wife home.

A medical evacuation costs about $57,000. "I'm dead broke," said Johnny. "I've used up all my savings and personal line of credit. I've had to borrow money from friends to get by the last eight months."

A wedding photographer, he sold his camera equipment to help pay for the $110 daily cost of care in Vietnam.

Every day at 4 a.m., Johnny calls his sister-in-law at the hospital and she props the cellphone against his wife's ear.

Chinh, who is hooked on a ventilator, cannot speak so Johnny does the talking.

Yesterday, he told her about Ethan, who turned six on Wednesday, and his simple birthday party.

"His birthday wish was that his mom gets better," Johnny said.

Her breath tells him how she feels: normal breathing means she is doing OK; quicker, shallower breaths mean she's feeling tired.

Chinh is almost completely paralyzed now. Doctors estimate she has about a year to live.

Erin Bernard, the director of the hairdressing school where Ngo was a student, remembers her as diligent and family oriented. "Those boys are everything to her. It's horrifying to think they're here and she's left there."

The situation is "very tragic," said Debra McPherson of the B.C. Nurses Union, which is helping to raise awareness of the family's plight. To be "stranded thousands of miles away from her family with the potential she'd die there without seeing them again -- to me, it felt wrong," she said.

Huynh is coming to Vancouver today to appeal for help.

Fundraising efforts on Vancouver Island have raised about $22,000. "The road to my wife coming back to Canada is getting closer," said the exhausted dad. "But we still need help.

"Even dead or alive, I will want to take her back here. Canada is her homeland."

Donations can be made at Coast Capital Savings Credit Union.

chchan@png.canwest.com

http://www.canada.com/theprovince/ne...0-443e1bca6c1b

Donations bringing home terminally ill woman from Vietnam
Sandra McCulloch, Times Colonist
Published: Saturday, November 03, 2007

A terminally ill Victoria woman will be home from a Vietnamese hospital before Christmas, so she can die surrounded by her family.

Ngo Huynh's trip, involving specialized equipment and an accompanying doctor, was made possible after a flood of donations reached $57,000.

"I'm so happy, I can barely sleep right now," said Johnny Huynh, Ngo's elated husband, from his Saanich home. "I can't wait to go over there and pick her up."


Ngo Huynh is suffering from amyotrophic lateral sclerosis, also called Lou Gehrig's disease.

The 39-year-old mother of three young sons is suffering from amyotrophic lateral sclerosis or ALS, also called Lou Gehrig's disease. The disease is fatal and progressive, and caused by degeneration of nerve cells in the central nervous system.

She was diagnosed in August 2006 and travelled to Vietnam in April, along with her family, to say good-bye to relatives and explore options for palliative care. But Ngo's condition worsened during the flight and upon arrival, Johnny took her to hospital, where she was put on a ventilator.

Johnny and the three boys returned home to Saanich in September, anguished at having to leave Ngo behind.

Johnny couldn't wait to phone his wife this week and tell her that due to the public's generosity, she could be coming home within weeks.

"Even though she cannot talk, she sounded so happy," said Johnny, adding his wife even laughed.

"Her condition right now is that she's almost paralyzed but her brain still functions and emotionally she's still OK."

A fundraising drive was administered by Terry Edwards, principal of Northridge elementary school, where the Huynh boys attend classes.

"I've never done anything like this before," said Edwards. "We went out to the Greater Victoria area and boom, it was done. It's truly marvellous and we are just thrilled for the family."

Several anonymous donors gave $5,000 each, said Edwards, calling the overall response heartwarming.

Doctors say Ngo is well enough to fly home and Johnny is now co-ordinating the complicated services she'll need on the flight. A Hong Kong doctor with specialized equipment will accompany Ngo, he said.

"She will be here before Christmas, that's for sure."

He credits the Times Colonist coverage of his family's plight for the generous donations to a trust fund in the family's name at Coast Capital Savings Credit Union.

Johnny has depleted his bank account paying for Ngo's care and taking care of the boys. He sold the camera equipment he'd used previously to earn a living as a portrait and wedding photographer, and recently made the decision to apply for social assistance. When he told his story, the woman interviewing him was moved to tears.

But at least he can look forward to his family being reunited.

"We know for sure there's no cure for my wife. But let's have her die with her family here, instead of with no one she knows over there."
http://www.canada.com/victoriatimesc...f7542a&k=32710