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Her two sons had a rare disease. After their deaths, she left the Air Force to become a nurse.

Air Force veteran Kathy Wales stands near her sons' handprints at her home in Bristow, Va., on May, 17, 2019. She became a nurse after caring for her sons, both of whom had a rare disease.

BILL O'LEARY/THE WASHINGTON POST

By JUSTIN WM. MOYER | The Washington Post | Published: May 22, 2019

Each year in the U.S., more than 160,000 people become nurses. One of them will report for work next month at a Virginia hospital.

A 15-year Air Force veteran, Kathy Wales stopped working in 2009 when her two young sons were diagnosed with a rare disease. She lost both in the years that followed — one to the illness, the other to suicide.

Wales will perform the same tasks as her fellow nurses, but she took a different path to wearing scrubs. She’s building a new career by working through grief, helping patients with their mental health and honoring the lives of her children.

“The biggest thing I’ve learned is that you have no idea what someone’s going through when you see them walking down the street. You just have no idea,” she said. “And I really would like to try to be able to make a difference for people like us.”

Kathy, 46, met her husband, Mike, in 1995 while they were stationed at Ramstein Air Base in Germany. They married the next year and bounced around the country, working as intelligence analysts before landing in Bristow, Va., about 40 miles outside Washington.

One night in 2009, her younger son, Alex, 9, woke up disoriented, tripped over a metal, toy truck and cut his chin. A few stitches, Kathy Wales thought, and that would be the end of it.

Alex started behaving strangely at the hospital. He wouldn’t sit in a wheelchair nor allow anyone to touch him. When given a drug to reduce anxiety, he only became more agitated, tried to pull out his IV and picked nonexistent ants off his body.

An MRI showed Alex had lesions on his brain and a blood test confirmed a diagnosis of adrenoleukodystrophy (ALD). The degenerative disease, which often strikes boys between ages 4 and 10, causes the brain’s nerve cells to lose their myelin sheaths, leading to blindness, deafness and an inability to speak. Death often follows within five years of a diagnosis.

“Your best hope is buy a video camera and enjoy your time,” Wales said doctors told her. “You might have six months.”

“No parent ever should sit still for that,” Mike said. “We started looking for second opinions.”

It was the start of a seven-year quest to forestall an inevitable outcome that would give Wales a painful crash course in nursing.

The first stop was the University of Minnesota, where Wales learned Alex could get a bone-marrow transplant that might halt the disease’s progress. One candidate for the donation was Zach Wales, Alex’s older brother — but, in a macabre twist, testing showed Zach also had ALD.

Kathy Wales said the diagnosis came as a “complete shock.” Zach’s ALD could become active at any time.

“That’s exactly what the doctors said would happen,” Wales said. “And there was no way to tell how or when.”

Wales stayed by Alex’s side as another donor was found and the bone marrow transplant was performed — “a horrible process,” she said.

Alex endured daily chemotherapy for three weeks. He was nauseous, unable to walk and stricken with hives.

The treatment did nothing to halt Alex’s slow decline. When overnight nurse Saffie Kamara started to work in the family’s home in 2011, he was nearly blind and had a feeding tube.

Alex could speak and attend church and school, but his speech was deteriorating.

Still, he charmed Kamara, then a 19-year-old nursing school graduate, who worked with the family for more than five years. She would field text messages from girls at Alex’s school and replied as he dictated.

“After awhile, I kind of tossed my nurse hat out of the window,” Kamara said. “I became a family member.”

Kamara found herself a vital part of the mini-hospital built into the Waleses’ home. It contained a pulse oximeter machine, an oxygen concentrator, a nebulizer, a ventilator and a host of other devices.

The gear to keep Alex alive came with a cost. Kathy Wales struggled for three years to secure Medicaid and battled insurers over payments. She searched for teenager-size diapers — Alex couldn’t fit in diapers for young children or adults — and bought a custom wheelchair part by part, only to learn her insurance company wouldn’t reimburse her for the wheels.

“You don’t get a case manager when you have a rare disease,” she said. “You have to learn everything yourself. There is no one to teach you.”

Not every family she worked for was as determined, Kamara said.

“I could pick up that it was different,” she said. “It was more than a mother’s love.”

Lt. Gen. VeraLinn “Dash” Jamieson, the Air Force’s deputy chief of staff for intelligence who has known Kathy Wales for more than 20 years, said the family’s home was a regular spot for parties and backyard barbecues. She said Alex was always included in activities despite his illness.

“One of the most amazing things during Alex’s deterioration of health was Kathy’s ability to be the mom that created the house that every kid in the neighborhood — every kid in the school — wanted to be at,” Jamieson said. “It was a lighthouse.”

Still, the end was approaching. Alex’s speech worsened to the point where his mother sometimes couldn’t understand him and, by summer 2016, he was “starting to give up,” Kamara said.

He died in September that year. He was 16.

“We knew going in that there was no grand outcome at the end of this road,” Mike Wales said. “We were fighting to keep him around — to let him have a quality of life that was as good as we could give him. It went from six months to him being here with us for seven more years.”

He added, “Kathy was the rock.”

After Alex’s death, Kathy Wales didn’t know what to do. Her son had been her full-time job.

Others around her had ideas.

“You should be a nurse,” Kamara told her. “You are a nurse. You care for your son … you are falling in love with it. I can see you have this passion.”

In February 2017, five months after Alex’s death, Kathy Wales started an accelerated nursing program at East Coast Polytechnic Institute’s campus in Manassas, Va. The program packed a lot into 18 months — anatomy, physiology, microbiology, pediatrics and nutrition. Kathy thought she could handle it. After all, she’d been through the Air Force.

Nursing school was harder, she said. And the medical know-how she picked up with Alex didn’t provide the advantage she expected.

Deep-suctioning — inserting a tube through the trachea to clear the lungs — was one example. She had done it for Alex many times. Doing it for a grade was different.

“It’s obviously different in school, with a plastic mannequin, than with your child,” she said. “It’s hard when there’s a clinical instructor watching. When it’s your child sitting there, looking at you, it’s a whole other story.”

About three months into the program, tragedy struck the family again. At age 20, Zach Wales took his own life.

It happened on an otherwise “normal day,” Kathy Wales said. Zach Wales had come home from his apprenticeship as an electrician. He was going to go out with his girlfriend. He had ordered parts for his pride and joy — a big, black, Dodge truck — and had made an appointment to have a tattoo filled in.

Kathy was studying for a test when she got the news.

“We were just starting to find our new normal,” she said. “It was the last thing I expected.”

The family searched for reasons. Zach Wales’ brother had died months earlier of a disease that could affect him at any time. He had been in counseling, but stopped going when he turned 18, choosing consultations with the family’s pastor. Whether his final act was the result of a bad relationship, grief or guilt, the result was the same. Both boys were gone.

“There are no words to describe what you feel and the just overwhelming loss and grief and hopelessness that you feel,” Mike Wales said. “You have a future that you think is set. You look out in a year and you see your son’s career and family and kids and grandkids and things like that, and the natural progression of things is interrupted, erased completely.”

After a three-month break from school, Kathy Wales did what she had always done: She came back. On June 3, she will begin as a nurse in the behavioral mental health program at the Novant Health UVA Prince William Medical Center in Manassas. At her pinning ceremony — an age-old tradition for new nurses in which they receive pins from veteran nurses — Kamara did the honors.

“Now that Kathy is doing this part of her life, going into her own field, it’s given her a sense of purpose,” she said “ I think that’s going to make her life happier.”

Jamieson said what her friend has gone through would leave her “rolled up in the fetal position.” Instead, Kathy Wales is powering forward into another phase of life.

“You are never too old to learn, grow, have the career that you always wanted,” Jamieson said. “Kathy really is truly a role model and inspiration to all.”

Kathy Wales’ mission is simpler. She is living for her sons.

“I don’t want anyone to ever forget them,” she said. “They were pretty unforgettable. We can help other people with what we learn. That’s the best way to remember them.”

A family photo shows Kathy Wales with sons Alex, left, and Zach, at her home in Bristow, Va., on May, 17, 2019.
BILL O'LEARY/THE WASHINGTON POST

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