Living for the day: Family finds joy in everyday life as 5-year-old battles brain disease

It started out as a normal morning for Jessica Gaston. Her husband, Josh, was getting ready for work when their 3-year-old daughter Hailey woke up. All of a sudden, Hailey started walking as if she were dizzy. After her parents took her to the hospital, the doctor suggested she was dehydrated and sent them home.

Later that day, Hailey started moving from side to side again. She began to slur her words and suddenly her right eye crossed. That day changed the family’s life forever.

“I had a normal pregnancy, and Hailey was born a normal girl,” Jessica said. “In those 24 hours, it just seemed like everything changed.”

Hailey’s symptoms got worse. While she was admitted to the hospital, she kept shaking and could not swallow. Doctors could not diagnose her.

After multiple MRIs, painful lumbar punctures and spending 10 days in the hospital, the doctors wrongly concluded that Hailey had encephalitis, an irritation or swelling of the brain, often due to infections.

In order to treat it, Hailey was prescribed with powerful steroids that affected her moods and appetite and gave her a round, swollen face, known as a “moon face.”

Hailey’s health continued to deteriorate over a short period of time. There were times when half of her face would go numb, she would vomit or simply could not walk.

After being off and on steroids for a year, Hailey’s doctors finally concluded that they had no idea what was wrong with her. They advised her parents to take her to another hospital.

The Gastons ended up getting a referral for Hailey to go to Ronald Reagan UCLA Medical Center, where a doctor mentioned leukodystrophy. The family had previously ruled out the condition after initial tests came back negative for the disease.

Little did they know, Hailey was tested for only the five most common types of the disease, and there are at least 50 types. Frantically, the family searched the Internet until they came across Primary Children’s Medical Center in Salt Lake City.

In 2012, Dr. Josh Bonkowsky, attending physician head at the University of Utah Leukodystrophy Clinic at Primary Children’s Medical Center, found that Hailey had undiagnosed leukodystrophy. The Gastons were devastated.

Bonkowsky said leukodystrophy is characterized by the degeneration of the white matter in the brain. Those affected by the disease may begin to notice progressive loss of body tone, movements, gait, speech, ability to eat, vision, hearing and behavior.

Eventually, the disease can cause a person to go into a vegetative state, to the point where one would no longer be able to breathe, eat or swallow.

Hailey, 5, has a life expectancy of age 10.

According to Bonkowsky, the disease affects one in every 7,000 babies, meaning that approximately 50,000 to 100,000 people in the U.S. have it. However, not all types of leukodystrophy are severe.

“Sometimes, people can go their whole lives without even knowing that they have it,” Bonkowsky said. “It all depends on what type (of leukodystrophy) people are diagnosed with.”

Since being diagnosed, Hailey has had to get a gastrostomy tube inserted through her abdomen that delivers nutrition directly to her stomach.

Instead of letting the disease control their daughter’s life, the Gastons decided to make life as normal and happy as they could for Hailey. They enrolled her in a special education class, where she takes the bus to school every day.

Her parents also enrolled her in physical therapy and hippotherapy.

“Even though Hailey has a very severe disease, she’s pulled through and really toughed it out,” Bonkowsky said. “We’re impressed by how well she’s doing. She’s been a soldier.”

According to Josh Gaston, the family has had to pay tens of thousands of dollars for medical bills. They have also had to put two liens on their house.

In order to save money, Jessica Gaston has been couponing since Hailey was born. She claims to have saved thousands of dollars. In a happy turn, her coupon collection eventually led her to enter a contest called 10,000 Reasons to Save, offered by www.valpak.com and www.savings.com.

The Gastons won $10,000, which they plan to use for Hailey’s medical expenses.

Jessica Gaston also started posting her journey on her website, hugsforhailey.com. She has since shared her emotional story with the world and sells necklaces and bracelets to raise money for Hailey.

“There’s no preparing for it, honestly. There’s no saying, ‘Why me? This isn’t fair,’ ” Josh Gaston said. “We’ve dealt with things as they come. We’re realistic, and that’s what has kept us going. We know that Hailey will eventually go downhill. We’ve learned to accept it and move on.”

Although the family lives day by day, Jessica Gaston said the difficult situation has only made them stronger.

“Hailey is always smiling,” she said. “I guess ignorance is bliss; she doesn’t know she has a terminal disease and that she might not make it until she is 10. She just lives in the moment.”

Contact Sunrise/Whitney View reporter Sandy Lopez at slopez@viewnews.com or 702-383-4686.