That’s true love
Lois Laminger says her husband is one in a million, but Gary Laminger knows that her rare neurological disorder makes her one in three million
ANNE KELLY
(Dec 15, 2006)
There are two special men in Lois Laminger’s life — one who has kept her alive, and one who makes her feel alive.
The former is Dr. James Gowing, a slow-talking medical sleuth who thrives on tackling seemingly insurmountable problems like hers.
The latter is a jovial romantic, Gary Laminger, whom the Kitchener woman met just before being diagnosed nine years ago with an extremely rare neurological disorder.
Called aceruloplasminemia, this fatal hereditary disease results in gross overloading of iron in the cells and organs of those who have it.
Due to a faulty gene carried by both of Lois’ parents, she lacks an enzyme in her blood plasma called ceruloplasmin, which transports iron out of the cells.
Gowing, a hematologist and oncologist at Cambridge Memorial Hospital, says only 30 to 40 cases have been reported since the disease was first described in 1990. No other cases have been reported in Canada. Typically patients die within 18 months. They usually come to their doctors with bizarre involuntary movements typical of those with Huntington’s chorea. Dementia also develops.
“By then it’s too late,” Gowing said.
The normally bubbly Lois was initially devastated when Gowing told her she had the killer disease at age 40.
He came up with a novel treatment which involves regularly infusing Lois with plasma from donors with a high level of ceruloplasmin. He also periodically removes iron-rich red blood cells.
The iron load in her heart and kidneys has returned to normal and has been lowered in her brain.
In the nine years Gowing has treated her, she hasn’t developed any neurological symptoms.
But her kidneys have failed. There’s no way to know if it’s because of the disease and treatment, since people without aceruloplasminemia also get her form of kidney disease, Gowing said.
Through it all, Lois has found happiness with Gary, the soul mate she met unexpectedly on the Internet and married in 2002. They share a love of laughter, teddy bears, angels, travel and the Boston Bruins.
“I’m at peace,” Lois said during an interview at their home. “I’ve never been happier.”
Her “guardian angel” Gary gave her his heart long ago.
On Wednesday he gave her his kidney.
Both were doing well yesterday at St. Joseph’s Health Centre in Hamilton where the transplant took place.
“He’s the most wonderful man in the whole wide world,” Lois said from her bedside phone.
“He doesn’t have to give me anything for Christmas.”
Gary, a postal clerk who works in Cambridge, loves surprising his sweetheart.
In 2002, he proposed to her on stage at a fundraising event sponsored by the city of Kitchener, for whom Lois worked as a customer service representative.
He was in the lip-synching contest and brought her on stage while he sang their favourite song, Lionel Richie’s Angel.
Seven months later, Gary surprised her again by inviting Gowing to their wedding.
The doctor’s gift was a bottle of Dom Perignon champagne.
The couple had met by chance on a chat line while Gary was living in Winnipeg.
He was planning a move to Kitchener for a fresh start after his marriage of 23 years dissolved.
Lois was also newly single after the end of a troubled 23-year marriage.
“I was not looking for a relationship,” she recalled.
He knew she was special the first time he heard her voice.
“I knew the laughter, I knew the happiness in her, how bubbly she was and the humour.
“I fell in love with and married an angel,” he said.
Lois said Gary came along at a time when she needed him most.
“He is a kind, loving, generous and funny man.”
The two shared Gowing’s champagne on their first anniversary. There was so much to celebrate; so much for which to be thankful.
Without Gowing, Lois is convinced she wouldn’t be around.
“He saved my life,” she stated. “I thank him every day.”
Gowing is an innovator. He was the first doctor in North America and the second in the world to try the anti-impotence drug Viagra on a young patient with pulmonary hypertension.
Wes Price, a 25-year-old from Cambridge, was just 19 when Gowing started treating him with Viagra for the disease which had killed his two sisters.
The active ingredient in Viagra has since been approved for hypertension treatment in Canada, the United States and Europe.
Earlier this year, Gowing presented Price’s case at a conference in Poland.
In August, he presented Lois’s case at a conference on movement disorders in Kyoto, Japan.
“Nobody in the world is doing what we’re doing,” Gowing said of Lois’ treatment regimen. “There was a lot of interest.”
Japanese researchers have estimated aceruloplasminemia occurs in only one in three million to one in six million people.
Gowing estimated only four or five people in the world are living with it at a given time.
Lois’ father died at age 50 of a heart attack. It’s not known if he had developed aceruloplasminemia.
Lois was sent to Gowing in 1997 with a diagnosis of hemachromotosis, a much more common and treatable iron-overload problem. He did a biopsy of her liver.
“She had about 100 times the normal amount of iron in her liver,” said Gowing. “I’d never heard of anyone that high before.”
He proposed something called a phlebotomy. His new patient was taken aback. She phoned her mother, Rosemary Armstrong, a retired nurse.
“He wants to do something that sounds like a lobotomy,” Lois relayed.
Armstrong laughed. A lobotomy is a long-discredited procedure which involves a crude cut into the frontal lobes of psychiatric patients. Phlebotomy removes blood, in Lois’ case to reduce iron-rich red blood cells. She began receiving phelbotomies weekly, then every other week.
But before long, she was anemic — deficient in iron.
“That was the clue,” said Gowing.
Lois’ problem was that she couldn’t move iron out of the storage areas in her cells.
Another treatment to remove iron, chelation, wouldn’t work because it doesn’t get into the cells, Gowing said.
The doctor went into detective mode, poring over existing research, of which there is little. He came up with the troubling diagnosis: aceruloplasminemia.
If Lois’ body couldn’t produce ceruloplasmin, was there a way to give it to her, Gowing wondered?
He contacted a London colleague who works with Canadian Blood Services and asked for donated plasma from donors with high levels of ceruloplasmin. Gowing then started infusing Lois with the plasma and before long, her iron levels started to drop.
Then in 2000, she was diagnosed with kidney disease. She ended up in hospital, where doctors also determined she had diabetes, which is a symptom of aceruloplasminemia.
Crushing fatigue forced her to give up her beloved job. She no longer had the stamina to continue her thrice-weekly workouts. The combination of inactivity and steroid drugs caused her to weight to soar from 123 pounds to her current 180 pounds.
Gary helped keep her spirits up. When she was well enough, they travelled and went to concerts. But by last April, her kidney function had declined to the point that she began dialysis treatments. She was told it was time to start looking for a live donor.
“I’m first in line,” Gary recalls telling her.
His own doctor warned that because of his weight, Gary wouldn’t qualify. But he was determined. He lost 41 pounds. His kidney function was excellent. He was a perfect match for Lois, in yet another way. “My mother calls him her hero,” Lois smiles.
Lois can never be sure what Gary will surprise her with next.
She returned home from a trip to her native Gaspé to find that he’d built her a cedar log bed, just like one they’d slept in on their honeymoon in Tennessee. In preparation for the kidney transplant, he surprised her with a website (http://billyraebob.bravehost.com) to update family and friends.
The site’s guest book has drawn well-wishers from around the world. In moving tributes, admiration flows for the pair’s strength and good humour.
Lois said laughter has a lot to do with their resilience.
“And a positive attitude. You can’t worry about it or you will go crazy. We decided we were going to take whatever they throw at us and just go on.”
She and Gary come from close families and between them have five grown children and three grandchildren
“I could never give up,” Lois said. “I have too much to live for.”
Gowing is among Lois’ many admirers “She is a fantastic lady. She is very optimistic about everything. She takes life in her stride and gets on with it.”
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WHAT IS ACERULOPLASMINEMIA?
A rare genetic neurological disorder
Patients lack an enzyme in blood plasma called ceruloplasmin, which moves iron out of the cells
Iron overloads in cells and organs causing damage
Both parents must have defective gene
Symptoms can include diabetes, retinal problems, involuntary movements and dementia
Usually develops between ages 30 and 50
Estimated to occur in one in three million to one in six million people
Only 30 to 40 cases reported since disease first identified in 1990
Often fatal within 18 month.
Well, I don’t know why I have hesitation to send off my final report to Qualitative Research but I do. Something feels like it’s missing. I should just bite the bullet and send it off.
