WORCESTER — Jenna Krikorian was one of the most productive girls’ hockey players in Central Mass. last winter. Skating for the co-op team with Shrewsbury, the St. Peter-Marian sophomore had seven goals and 18 assists for 25 points. Her assists led Central Mass., and her points tied for sixth.
Jenna played so well, Worcester Academy offered her a scholarship, and she’ll repeat her sophomore year and play for the Hilltoppers this coming season.
“To chase my dreams to play college hockey,” she said.
Four years ago, any such dream appeared dashed.
“I didn’t want to play hockey anymore,” the 16-year-old Worcester resident admitted. “I wanted to quit. I never saw myself going to a prep school for hockey, never mind being healthy enough to play hockey for such a highly ranked team.”
Jenna had always been a very good athlete and an especially strong youth hockey player. When she turned 12, however, her rushes into the zone slowed. She’d fall and have a hard time getting up. Her parents attributed her troubles to growing pains and urged her to try harder.
“We thought it was a matter of effort,” Jenna’s mother, Donna, said last week while sitting at the dining room table with her family at their home. “I feel bad. I can’t undo that.”
Jenna began to doubt her ability. Then came some very unwelcome news.
Upon returning to her home from a hockey tournament in Lake Placid, New York, Jenna saw a doctor for an ear infection, and the doctor became alarmed over her weight loss. She had dropped 22 pounds in less than three months. Medical tests seemed to reveal a devastating diagnosis — that she had developed limb-girdle muscular dystrophy that causes weakness and wasting of the muscles in the arms and legs.
Donna and her husband, Kraig, were told that Jenna may not walk again and probably would not reach her 21st birthday. They kept the diagnosis a secret from Jenna. They couldn’t sleep, so they’d watch Jenna sleep.
“I was terrified for you,” Donna said while looking at Kraig, “because I had never seen him so beside himself, crying and frantic. You’d get all welled up, and she’d come in the room, and he’d leave because he didn’t want her to see that we knew something was going on.”
Donna focused on arranging the best medical care for her daughter.
“She was muscle wasting and deteriorating right in front of our eyes,” Donna said.
Her muscles weakened the more she used them.
Jenna underwent one more test to rule out juvenile dermatomyositis, a rare auto immune inflammatory disease whose symptoms include a skin rash, muscle weakness and inflamed muscles.
For nine days Jenna remained hospitalized, and the Krikorian family awaited the result of an electromyograph. Finally, the family learned in April 2013 that Jenna indeed had juvenile dermatomyositis, a serious condition, but not as dire as muscular dystrophy.
“I tell people that that was like hitting the lottery,” Kraig said, “that finding out that your daughter was really, really sick was the happiest day of my life because she didn’t have muscular dystrophy.”
There’s no cure for dermatomyositis, but symptoms can be managed. Only two in a million develop the disease.
The Krikorians brought their daughter to Boston Children’s Hospital on a Thursday night for her first treatment. Jenna’s mother stayed with her, but her father went home with the intention of returning the next morning. He couldn’t get back to Boston until that night, however, because the city was shut down that day by the search for the Boston Marathon bombers. Jenna’s doctors couldn’t even find their way to the hospital that day to begin the treatments.
The first treatment didn’t work, so doctors went in a different direction. Jenna began receiving weekly intravenous treatments that lasted six to eight hours. She was given high doses of prednisone, methotrexate and treated platelets. She received a number of other drugs orally as well.
“She’s very strong,” her 17-year-old brother Brennen said. “I couldn’t do that needle stuff.”
Jenna had dropped to 86 pounds, but her steroid treatments ballooned her to 160 at one point, and her face became bloated. Her hair thinned. She suffered from headaches. She slept and ate a lot. She missed more than 40 days of school in the latter part of the sixth grade.
“I had no idea what was going on,” Jenna said.
Jenna’s disease was so rare and multisystemic that every doctor at Children’s Hospital seemed to drop in to see her when she was first admitted. There were neurologists, rheumatologists, dermatologists, nutritionists, cardiologists and pulmonologists.
“There were lines out the door,” Jenna said.
Former Bruin Shawn Thornton visited Jenna at Children’s Hospital and was thrilled when she recognized him. Jenna grew so excited, her blood pressure shot up, and Thornton had to leave the room for a while so she could calm down.
Somehow Jenna didn’t become depressed even though she had to crawl up stairs, had to roll to get out of chairs and bed, and couldn’t lift her head from a prone position. She could walk, but she’d trip over things and fall. Jenna finally broke down and cried when the doctor told her she couldn’t play sports — no Lady Crusaders travel team hockey or Jack Barry softball. She couldn’t even spend much time outdoors that first summer because she’d develop a rash.
The treatments slowly did their job. Eventually they were reduced to every other week, then monthly. The bloating is gone, all of her hair is back, and she feels much better. She’s down to 130 pounds.
Because she is so young, Jenna had plenty of time to build her muscles back up.
She’s not symptom free, but she’s much healthier. Four years of treatments ended in May, and the family hopes she won’t have to resume them. She’ll still have to take daily medication at home for at least a year.
“I feel fine,” she said, “like nothing ever happened.”
Jenna urged her mother at every doctor visit to get permission for her to skate again. She finally got the go-ahead the winter after her diagnosis to practice some with the Lady Crusaders, but not to play.
The next year, she was strong enough to play for the Lady Crusaders and also skated for the St. Peter-Marian boys' junior varsity hockey team. For the final game of the year, she became the first girl to play for the SPM boys' varsity team.
As a ninth- and 10th-grader, she skated for the Shrewsbury-SPM co-op girls' team. Last winter, she played right wing and rotated between the first and second lines.
So what has the ordeal been like for her?
“Long,” she replied. “Like a roller-coaster ride.”
Jenna’s lab results last week brought mostly positive news.
“We’re close to the end, but we’re just not there yet,” Jenna said.
“She’s worlds away from where she was,” Donna said.
Jenna always worked as hard or harder on the ice than anyone. She had to in order to keep up when she was ill. She still works hard now even though she’s healthy again.
“It kind of comes easy now,” Jenna said.
She’s also playing softball again, for the SPM junior varsity and Jack Barry.
On Oct. 15, Jenna will take part in Walk Strong to Cure JM, a walk at Green Hill Park to raise money for juvenile dermatomyositis research. Anyone wishing to donate can visit crowdrise.com/jennakrikorian, or cureJM.org.
When asked what she’s learned about herself, Jenna did her best Kevin Garnett imitation by declaring, “That anything’s possible.”
Near the Krikorians' front door hangs a little sign that reads, “Gone to the rink.” Jenna couldn’t be happier to be back at the rink again.
—Contact Bill Doyle at email@example.com. Follow him on Twitter @BillDoyle15.