HHT: The story of a fatal blood disease that impacted a Fishtown family

Haley thought she was having a heart attack, but nobody quite knew what was wrong with her - not even the paramedics.

Haley’s stepdad, John “Wally” Wallace, her mother Susan and her stepbrother John, who’s holding a picture of Haley.

Haley Morris, who was a successful athlete in both soccer and softball during her time at St. Laurentius School, was about as healthy as any 20-year-old could be. Or so it seemed.

“She went to the gym, like, six times a day,” said her cousin, Malinda Morris. “I used to make fun of her because she was so healthy. She’d be like, ‘Oh, I can’t eat a doughnut because I want to be skinny.’ And I was like, ‘You’re so skinny. You can’t get any skinnier.’”

That’s why, when Haley came home from working at Chickie’s & Pete’s in the early hours of Valentine’s Day, the events that followed were so bizarre. After spending a few hours in her bedroom on the phone with Austin, her boyfriend of three years, she ran into the upstairs hallway of her mother’s home in a burst of sudden and severe pain.

“She said, ‘Please help me. I can’t feel my arms,’ ” recalled her mom, Susan Morris. Haley eventually slipped out of consciousness, and then back in consciousness and out a few times, until the ambulance came.

“When the ambulance came, no one knew what was wrong with her,” said Susan. “Before this, she was a beautiful, flawless girl.”

Haley Morris and her stepdad, whom she considered her dad, John “Wally” Wallace. | Taken from Haley’s Facebook profile and used with permission.

Haley thought she was having a heart attack, but nobody quite knew what was wrong with her – not even the paramedics. By the time Haley’s family made it to the hospital, the doctor delivered the worst possible news. Haley didn’t make it.

It wasn’t until the autopsy when the family found out Haley’s cause of death. Her entire life, Haley suffered from Hereditary Hemorrhagic Telangiectasia (HHT) and didn’t know it.

“The very idea that this is our life now and that HHT has came into play is a total game-changer,” Susan said. “It has literally changed our entire life.”

Her stepdad, who’s been her father figure since she was about 4 years old (Haley’s biological father died in a car crash when she was very young), was just as distraught.

“As a father, she was never really the rebellious teenage girl,” said her stepdad, John Wallace, whom everybody calls Wally. “She listened when I gave her advice in life. She always went along with the flow and always valued my advice. Being the father of a teenage daughter can be difficult, but she was always easy to get along with. Just the easiest daughter that I think any [father could] ask to raise. When it came to boys or friends, she would come to me or her mother and we would talk to her.”

The first H in HHT is an important one, because it stands for hereditary. Susan had had a number of deaths on her mother’s side of the family over the years that were believed to be aneurysms, however, it’s likely that HHT was the actual reason behind the deaths. In the coming weeks, Susan and her son – Haley’s stepbrother – have plans to get tested for HHT as a result.

Despite the fact that HHT is about as common as cystic fibrosis, many people simply haven’t heard of it. In the wake of Haley’s death, Susan is trying to do something about that.

“Right now, I’d like to start by putting little pamphlets with school nurses,” said Susan.

It’s important to raise awareness for the disease, Susan said, because oftentimes there are symptoms one can detect before a tragedy happens. Having frequent nosebleeds, for example, is just one example of an HHT symptom. (This isn’t always true, however, especially in Haley’s case. “Haley never had nosebleeds,” Susan said. “Not one nosebleed can I remember the kid having.”). Eventually, Susan wants to start a nonprofit foundation in Haley’s memory to raise money to give to Cure HHT, an organization that, in part, funds research to find better treatments and a cure for HHT.

Haley’s stepbrother John and her aunt Heather held an informational booth at St. Laurentius School’s Spirit Day celebration at Shissler Recreation Center on Thursday. | Photo by Tom Beck

The Star reached out to several people who’ve known Haley, and words that came up frequently were “beautiful,” “genuine” and “smart.”

“There were certain kids who stand out, and she was one,” said her seventh-grade teacher, Duane Rutkowski. “She was a great kid. There’s certain kids who give you a hard time in class or whatever, but she never did. She was right there and she was always right there and she was polite and respectful. Always willing to help me and she did her work. There was never a problem.”

Haley’s aunt, Heather Morris, called Haley “an amazing, sweet, genuine, smart, kind, loving soul.”

Julia Thomson and Eva Donnelly, who are now both eighth-graders, were second-graders at St. Laurentius when Haley was in eighth grade. They both said they looked up to Haley a great deal, and that she was known for her skills on the soccer and softball fields.

“We love her family and how involved they area and we want to support them through their mission,” said Donnelly.

Susan’s mission to help find a way to find a cure for HHT is not only a way to help find a cure, but a way to help the family cope with their loss.

“If you don’t make something beautiful out of the tragedy,” Susan said, “then you become tragic yourself.”