A playoff tennis match was nearing its end when knee pain that had plagued Taryn Enck worsened. A junior at Bishop McGann-Mercy High School in the fall of 2009, Enck was playing a doubles match alongside longtime teammate Kayleigh Macchirole.
“We were fighting together,” Ms. Macchirole said. “I knew that we had to finish the match because Taryn couldn’t go on.”
The details of that match may have faded over time, but it’s the memory of the toughness Ms. Enck displayed on the court that stands out these years later. It didn’t matter, in the end, whether the duo won or lost — and no matter how a match ended, they always finished with a hug.
Ms. Macchirole thought back to that moment this month after learning that her close friend had died Aug. 10 at age 25. She recalled how Mercy girls tennis coach Mike Clauberg would describe the match afterward.
“It was the shining moment for the two of us, he would say. Our bond and love for each other really showed that day,” Ms. Macchirole said.
The teammates prevailed 4-3, upsetting the No. 8 seed from Patchogue-Medford.
The knee pain Ms. Enck felt that day was caused by a rare genetic condition called hereditary angioedema, or HAE. The disease causes certain proteins in the body to fall out of balance and tiny blood vessels to push fluid to different parts of the body. There’s no known cure. Ms. Enck was susceptible to swelling throughout her body, from her throat to her hands to her stomach, at times causing excruciating pain.
HAE affects an estimated one in 50,000 people, according to the U.S. National Library of Medicine. The specific strain Ms. Enck suffered from was even rarer. Symptoms typically begin in early childhood and worsen during puberty. Physical activity, stress or illness can exacerbate all the symptoms.
In addition, Ms. Enck had celiac disease, an autoimmune disorder that prevented her from eating wheat or gluten.
During her years at McGann-Mercy in Riverhead, where she graduated in 2011, Ms. Enck never complained about the obstacles she faced or made excuses for why she might not have performed up to her potential in a given tennis match, those who knew her best said.
“If you told her no, that just made her work harder,” said her mother, Cathy.
Mr. Clauberg added: “She was an amazing tennis player. She was able to fight off pain and fight off suffering while playing. It was an enormous task. I’ve never seen anybody like it.”
Cathy Enck said the family first began to notice her daughter’s issues around her freshman year at Mercy. They didn’t know what exactly plagued her and finding a precise diagnosis proved a challenge, given the rarity of the disease. It wasn’t until she was 17, after her tennis season, that doctors finally diagnosed HAE. Ms. Enck was admitted to Southampton Hospital and then transferred to New York-Presbyterian/Columbia University Medical Center.
“The team of doctors were constantly taking all sorts of bloodwork and doing all sorts of tests,” her mother said.
She was hospitalized for three weeks. But doctors had good news: A drug had recently been approved by the FDA that they thought could be helpful. Cathy Enck said the medication kicked in quickly and her daughter’s swelling and distended stomach began to subside.
Administering the medication became a constant in her life in the years that followed. She required infusions every three days and, in the beginning, would get them intravenously. But soon her veins began to deteriorate, requiring doctors to place a PICC — or peripherally inserted central catheter — in her arm that delivered the medication.
“She was able to maintain school and playing tennis as long as she was able to keep her infusions every three days,” her mother said.
Officials at Mercy worked with the Riverhead School District to provide a nurse to assist Ms. Enck, who lived in Montauk, while she was in school.
“Everybody in the school, all the tennis teammates and friends were always so supportive of her,” Cathy Enck said.
Ms. Enck rarely divulged much about the severity of her illness during high school. Mr. Clauberg said he never knew the disease could be life-threatening.
Ms. Enck ended up missing most of her senior year in tennis. She had joined the varsity as a freshman, and was one of only five players in school history to be on three league champion teams (2008-10). In 2009, as a junior, Ms. Enck and Ms. Macchirole went 15-2, earned all-division honors and reached the quarterfinals of the county tournament.
Both were set to be captains as seniors in 2010.
“Considering all the challenges that she faced, she was always one of the most positive people and one of the toughest people I’ve ever known,” Ms. Macchirole said. “She would never give up on anything.”
The two became close friends, and Ms. Enck would often stay with Ms. Macchirole and her family in Greenport during the summer or when a match ran late during the season.
“We used to joke that we were the two people at the end of the world,” said Ms. Macchirole, who competed in track and field at Wagner College after graduating from Mercy.
Mr. Clauberg remembered Ms. Enck as a determined athlete, the kind of player who wanted the pressure and was never afraid to go after a tough shot. She embodied the Mercy spirit, he said.
While Ms. Enck gravitated toward tennis in high school, she played nearly any sport imaginable as a kid — from basketball to softball to volleyball.
“She was a natural athlete,” her mother said.
Ms. Enck received interest from colleges to play tennis. As the picture cleared during her senior year and the reality of her illness set in, Cathy Enck knew it would likely be impossible for her daughter to compete at that level, but didn’t want to discourage her.
After finishing at Mercy, Ms. Enck tried to attend college, but the stress only increased the swelling attacks, her mother said. She lived at home in Montauk and was constantly in and out of hospitals and visiting specialists across the country.
In May, she was maid of honor at her older sister Megan’s wedding in Montauk.
Services for Ms. Enck were held in East Hampton Aug. 13 and a Mass was held in Montauk the following day. Her mother said she was overwhelmed by the support and love the family received.
“The Mercy family has been unbelievable,” she said.
A few days before she passed, Ms. Enck noted that she wasn’t feeling well, her mother said. They talked about going to the hospital, but Ms. Enck opted against it, reassuring her mother that she simply needed some rest.
“She was such a strong-willed person,” her mother said. “A lot of people didn’t know what her disease was. They knew she had something, they just didn’t know how serious it was. She fought to the very end.”
Top photo caption: Taryn Enck pictured in the fall of 2009 playing tennis for Bishop McGann-Mercy High School. (Credit: Barbaraellen Koch, file)