A Change In Jackie She Was A Bright And Normal Child, But When Jackie Tomson Hit Her Midteens, She Changed Drastically. Nobody Could Explain Why.

At sweet 16, Jackie Tomson turned anything but.

The laughing child Chuck and Martha Tomson called their “tagalong” because she was born nine years after their fifth child, had been their joy.

No longer.

Her grades slipped. The Camp Fire girl who had played flute started skipping classes and smoking cigarettes. She dropped out of North Central and moved out of the house.

Depressed, difficult, impulsive, Jackie told fibs and fell in love, repeatedly, with men who beat or robbed her. The Spokane police began to know her - as a victim - by name.

One night she said she was going to State Line and ended up in South Dakota.

“It was a nightmare,” said Chuck Tomson, 68. “It couldn’t get any worse.”

The retired car salesman and his wife, Martha, a retired senior clerk at Farm Credit, had experienced nothing like it with their five older children. They took her to a tutor, to doctors, to counselors. They emptied overflowing garbage in her apartment, covered her bounced checks and accompanied her on her driver’s test - six times - until she finally passed.

Late at night, when she’d call stranded at a restaurant on North Division, Chuck Tomson would dress and go pick her up.

“I just had to know she was all right,” he said.

The couple talked far into the night about what to do about Jackie. They prayed. They asked one another what happened.

‘We all thought that it was a rebellious teenage thing and then we all started wondering why she wasn’t coming out of it,” said her sister, Char Thomas.

“Everyone in the family just looked at Jackie and thought, what is wrong with that kid?” said her brother, David. They figured their “adorable” baby sister was mentally ill, though doctors didn’t confirm it. They figured she was doing drugs. Tests turned up none.

“I can’t help it,” the 26-year-old Jackie would say, her dark eyes filling with tears. “Why do I have to be so stupid?”

She hated how she felt: lonely, depressed, somehow off. She couldn’t keep a job. She often hated her parents.

“Stay out of my life,” she’d say. Then a boyfriend would hit her, or a few days would pass, and she’d be back.

She became pregnant, twice. Martha stood beside her as Jackie delivered both children and when, in open adoptions, she gave them up.

“We knew she could not take care of them, she couldn’t take care of herself,” Martha said.

Jackie was angry about the adoptions, resentful and hurt, but then like so much of what troubled her, she seemed to forget it. Her mother saw to it she got a birth control shot every three months.

“They backed her on everything,” said their eldest daughter, Char. “A lot of good parents would have said enough is enough and rightly so.”

The Tomsons never did. Even at her most maddening, Jackie was easy to be around, “a chum,” Chuck said, soft-hearted and sweet, outgoing, and chatty. She shared meals with her parents, trips and holidays. But she was no judge of character.

“She would take in every stray, human and animal,” her dad said. More than once he tossed the humans out and helped Jackie move when she was evicted. She was so careless. She’d slosh coffee across a rug, unaware of trailing stains.

Two weeks ago, she dropped a cigarette and set her couch on fire. Her boyfriend had to drag the heavy sofa outside, where hours later, the smoldering fabric erupted again. The Tomsons had installed an extra smoke alarm in Jackie’s apartment just in case of such an event.

They also covered the extra cost of the apartment because it was comfortable - and close. In their 47th year of marriage, the couple spent much of their time driving Jackie to counselors and doctors.

“What else could we do?” said Martha.

Private counselors and Spokane

Community Mental Health professionals had, at times, considered Jackie bipolar, psychotic and finally schizophrenic. And it was there Martha’s endless patience finally ended.

A decade of visiting doctors and counselors had supplied no answers. At her mother’s insistence, Jackie underwent a CAT scan and MRI. Her mother will never forget what the doctor said afterward.

“He asked if I had ever seen the film ‘Lorenzo’s Oil.”’

Apparently, about the time Jackie turned 16, metachromatic leukodystrophy began destroying her brain. The disease is similar to adrenal leukodystrophy, which was portrayed in the Susan Sarandon film.

Rare in children, and rarer still in adults, it is a progressive disease that destroys the white matter of the central nervous system. Passed on by parents who each carry the trait for the disease but do not have it, odds are it will affect one in four offspring.

Of the six Tomson children, one brother is a carrier and Jackie has the disease. As such, she lacks an enzyme and the resulting metabolic imbalance gradually affects the brain, kidneys, liver and gall bladder.

Over time, the conduction of electrical impulses through the nervous system is interrupted and the nervous system cannot function.

A list of early symptoms reads like diary entries for Jackie: learning difficulties, behavioral problems, clumsiness, psychosis, schizophrenia-like behavior. For years she complained of physical problems, too, stomachaches and a body temperature that was either freezing or burning up.

After 10 years of questions, in June, the Tomsons finally got an answer.

“It was a little bit of a victory for Mom,” said son David. But it was an intolerable one. The disease is incurable. Doctors have warned Jackie will lose enough mental capacity to require institutional care by her mid-30s.

In July, the Tomsons traveled to the University of Minnesota to investigate experimental bone marrow transplants. Although it would not reverse the brain damage, the transplant would provide a new source of the enzyme and could prevent further decline. Jackie would be only the sixth person to receive such a transplant.

The procedure was scheduled in Minnesota when Jackie’s Medicare and state-paid insurance required the transplant be done in-state. The Tomsons rescheduled their plans for Seattle and left Sept. 19.

Her sister Char, an instructional aide with School District 81 and mother of three, will donate the healthy marrow if Jackie is approved for the transplant.

Living in a rented apartment with rented furniture, Martha walks Jackie to Fred Hutchinson Cancer Research Center every day.

Tuesday, doctors will decide whether Jackie can withstand the required chemotherapy (which could cause further memory loss) and steroids (which could damage her organs).

If approved, she’ll require 24-hour care for several months after the procedure - care provided by her mother. It could take two years for the new cells to arrive in the brain and make much of an impact.

So why do it?

“I feel this is her only chance,” her mother said. “I don’t want to see her in a vegetative state.”

Watching her undergo a battery of blood work, physical and mental tests last week, her father was badly shaken.

“I look at her and I have to turn around and walk out. It’s terrible, I can hardly stand it,” he said. “She trusts her parents, she’s like a 15-year-old kid again. She’s had a lot of bad breaks and this is the big one.”

On the walls and shelves of the Tomsons’ west Spokane home are pictures of the children and 15 grandchildren, Jackie’s two among them. Christmas Eve brings more than 25 clan members to share Martha’s crab Louis and a mountain of presents.

The diagnosis has given the whole family more patience with her and peace to know her behavior is not purposeful. They wish the answer would have come years earlier. And they fear its consequences.

Chuck knows their savings will be gone by mid-winter. He doesn’t know what will follow, but vows not to bother the other children about money or caring for Jackie. The siblings are worried about Jackie and their parents.

Chuck withstood prostrate cancer earlier this year. He has had two open heart surgeries and gives himself insulin shots twice a day for diabetes. His Martha Mae is away for the first time in their marriage and the house is too quiet.

In Seattle, Martha and Jackie are keeping it together with humor and home-cooked meals, but Martha uses Jackie’s shoulder for support. She does not think about the months ahead or how else she could have spent her retirement.

“Our biggest concern is that she’s the one who doesn’t have the normal life. We do. Our thinking process is still OK, hers isn’t. She’s lost out on so much and she knows it,” Martha says.

Someone once asked the mother of a large family which child she loved most. The woman replied, the one who needed her.

“She’s going to need us constantly, forever,” says Martha. “What’s going to happen when we’re gone? Who will have the patience?”

Who will care for Jackie? Their tagalong, their baby, their life. , DataTimes ILLUSTRATION: 2 Color Photos