Nursing Graduate's Sad, Inspiring, and Unlikely Path to her Career as a Nurse

After Losing Two Sons, Northern Virginia Mom Turns Her Grief into Action

Kathy Wales' journey to becoming a nurse was, to say the least, unconventional, unforeseen, and began when she started caring for her son. Alex was a typical feisty, rambunctious boy. At the age of nine, he fell one night and cut his face which required stitches. At the emergency room, he became agitated, angry, and confused – all very much out of character.

Acting out of an abundance of caution, doctors ordered an MRI, which revealed a spot on Alex’s brain. After he was diagnosed with Torch infection, Kathy was skeptical and sought a second opinion. Soon after, she received the devastating news. Alex had a terminal disease, Adrenoleukodystrophy or ALD, an extremely rare disorder with a wide range of cognitive symptoms. The cerebral form – which Alex had – includes aggressive behavior, vision problems, difficulty swallowing, and poor coordination. The rate at which this disorder progresses is variable but can be extremely rapid, often leading to total disability within a few years.

“We were told that there was nothing we could do,” says Kathy. “They recommended we go home, buy a video camera, and enjoy the time we had left with him.” Kathy would have none of that. She got to work, locating every expert in the field – there were quite few – and learned about a treatment that involved a bone marrow transplant.

The family enjoyed a brief glimmer of hope when they learned Alex’s brother, Zach, was a match. Further testing showed, however, that he too had ALD, but was asymptomatic. After that, Kathy separated from the Air Force to devote herself completely to his care, and was his biggest advocate throughout countless hospital stays, appointments, procedures and medication reviews.  She was tireless in her research into all aspects of the disease and the care of her son, gaining the respect and admiration of Alex’s medical team, while still making life as normal as possible for the entire family. 

Eventually, Alex underwent a stem cell transplant at the University of Minnesota, which was successful, meaning he engrafted to 98 percent of the donor cells; however, his brain was too far damaged, and the donor cells did not stop the disease from progressing. Alex lived 7 ½ years post diagnosis, far exceeding expectations. 

After Alex passed, Kathy knew she wanted “to make a change…make a difference…make things better for parents and families like” hers.  “There is a whole world out there full of caregivers who are struggling,” she says. “As a special needs parent, you don’t have the time or energy to fight to improve things because it’s all spent taking care of your child and just getting through the day. There are no case managers to guide you through the healthcare system when you have a rare disease like ALD. You learn what you can, where you can. There are just some huge gaps in the system and I want to fix that.” 

Kathy tried to find some type of organization she could join that could help solve problems for other medically complex children. A nurse at Children’s Hospital told her, “We don’t have anything like that here…you’d have to be a nurse and work here to do anything like that.” So, Kathy did just that and enrolled at ECPI University to become a nurse.

“There is a whole world out there full of caregivers who are struggling. As a special needs parent, you don’t have the time or energy to fight to improve things because it’s all spent taking care of your child and just getting through the day. There are no case managers to guide you through the healthcare system when you have a rare disease like ALD. You learn what you can, where you can. There are just some huge gaps in the system and I want to fix that.” 

~Kathy Wales – 2019 Nursing Graduate, Northern Virginia Campus

Kathy enrolled at the Northern Virginia campus in Manassas and began classes on February 28, 2018 which, coincidentally, was also World Rare Disease Day. One month later, her world was shaken to its core once again. She lost her only remaining child, Zach, at the age of 20. He took his own life just nine months after Alex succumbed to his disease. Grief stricken, he knew he had a chance of suffering the same fate at some point in his future. At his memorial service, several people told Kathy how proud Zach was of her for going to school, something he had never voiced to his parents.

Kathy says during this time, faculty members were incredibly supportive and made it clear that there would be a place for her as soon as she was ready to return. With incredible strength and resolve, she came back the next term.

On May 31, Kathy will graduate, carrying an impressive 3.5 GPA, and as a member of Phi Theta Kappa and the National Student Nursing Association. At her pinning ceremony, Alex’s favorite home health nurse, Saffie, placed the pin on her uniform. Faculty member Dr. Erica Jones-Foster told Kathy, “Your boys made you a great nurse.”  Kathy says that was one of the nicest things anyone has ever said to her. “She is a great teacher. I couldn’t have gone through the program without her. She’s one of the most positive people I know.”

The critical link that nurses played in Alex’s care underscores the fitting career Kathy has chosen. She attests from personal experience that “we learned very quickly that it’s the nurses who make the real difference for patients and their families. We couldn’t have made it through all this without the help of the amazing nurses we had at each hospital Alex was in.” 

Is nursing your calling? If you want to learn more about how to become a nurse and earn an Associate Degree of Nursing, consider ECPI University for the education you want. For more information, connect with a friendly admissions advisor today.

It could be the Best Decision You Ever Make!

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