Twins Share Unique Bond Even As Chromosome Divides Them
SAN DIEGO — On a Saturday afternoon at La Jolla Shores, the waves are so small and the water is so glassy that the Pacific Ocean looks like a lake.
Michael Toronczak stands in the smooth, wet sand staring at the water. The tide gently arrives and touches the toes of his white tennis shoes, but he shows no signs of retreating.
He is clothed in jeans, a white polo shirt and blue sweater, but if his sister Julia wasn’t gently tugging on him, Michael would probably walk out, at least up to his knees.
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“Oh, he definitely would,” Julia says with a laugh.
Julia stands close to Michael, speaking quietly to him as she traces circles on his back with her fingertips. Occasionally, she reaches up to softly tousle his hair. Michael responds with short humming sounds.
Often on a weekend day the two can be found here on the beach because this is their favorite place to spend time together. The sights and the waves’ white noise soothe Michael, and Julia understands that because she finds her own comfort in the water.
They are 20-year-old twins, and when they leave the beach, their lives could not be more different.
A single chromosome determined that. Michael has Down syndrome. Julia does not.
Julia Toronczak, a former standout athlete at West Hills High in Santee, is a swimmer at the University of California, San Diego and this week appeared in her third straight NCAA Div. II National Swimming & Diving Championships in Birmingham, Ala. The 5-foot-6 junior has previously earned All-American status in three different events, with a specialty in the 200 backstroke, at which she was undefeated in dual meets this season.
Her major is general biology and she hopes to one day be a pediatrician.
Michael Toronczak was born with a form of Down syndrome so severe that he cannot speak and is limited in his cognitive and motor abilities. He underwent successful surgery for a heart defect before he was 4 months old and lives under the constant watch of caretakers — much of the load falling to his mother, Grazyna.
Down syndrome occurs when a baby receives an extra copy of chromosome 21. For one twin to have Down syndrome while the other does not is extremely rare. A 2003 British study concluded that in a group of 1,000 babies with Down syndrome, 14 or 15 would have a twin or triplet who is unaffected.
The U.S. Centers for Disease Control and Prevention estimated in 2008 that 1 out of every 1,200 people — or 250,700 in America — had Down syndrome.
Many more people with Down syndrome likely would exist, but prenatal screening for the condition is highly accurate, and the rate of fetuses with Down syndrome who have been aborted is estimated to be between 67 percent and 85 percent in the United States and Europe.
Grazyna Toronczak and her husband, Zbigniew, a software programmer, didn’t know or care about any of those statistics when told that it was possible that one of their twins might have Down syndrome. Both were 40 years old with their first children on the way.
Sitting on the short beach wall at La Jolla Shores while Julia and Michael stood by the water, Grazyna said in the thick accent of her native Poland, “I wanted both kids. I wouldn’t have been able to have just one of them. It was my choice. I don’t know what I would do if I would be 30 or 23. But even then, I think no. They were my kids.
“I think every woman has to make a decision on her own. Either way, it is difficult.”
Twenty-seven hours of labor on April 26, 1996, at Kaiser Permanente Zion Medical Center left Grazyna exhausted and ready to have her babies by Caesarean section. Julia was delivered first, her body looking mangled by being wedged in the womb at an odd angle. Then came Michael, whose cries were immediately different to Grazyna’s ear.
Minutes later, they were both resting quietly in their mother’s arms.
“I never saw such beautiful children,” she said, her eyes becoming bright. “It was the most happy moment of my life. Julia was perfect. Michael was perfect.”
On her cell phone, Julia keeps a cherished family photo. In it, the twins are no more than a few weeks old, having been reunited after Michael spent time in intensive care because of his heart condition. Julia has a full head of brown hair and chubby arms. Michael is bald and frail.
The babies gaze at each other. Julia’s left hand touches Michael’s forehead, her right hand cups his left.
“It’s my favorite picture of us,” Julia said. “I’m just so taken aback by how much love you can see in that picture. You can see how close we are. You can see there’s a tight bond already.”
The older they got, the more their childhoods were different. Julia walked before their first birthday; Michael was 3 before he reached the milestone. Julia, her mother said, was fiercely independent and constantly asked questions. Michael’s every need required tending.
Julia loved the water at a young age, threw a fit when bath time was over, but “hated” when her dad, a former sailor in the Polish navy, took her for formal swim lessons.
“I was that kid you didn’t want in your lesson,” she said with laugh.
At around 9, her parents signed her up at an East County swim club and refused to let her play any other sport.
There also was one strict rule in their home: no English was spoken, only Polish. Julia speaks it fluently still and has made numerous trips to Poland for family visits, while Michael understands phrases in both languages.
Julia’s heritage actually became her motivation for swimming.
In the 2004 Olympics in Greece, Polish swimmer Otylia Jedrzejczak captured gold with a world record in the 200-meter butterfly, and Julia was captivated. Jedrzejczak later auctioned off her gold medal and donated the money to children’s cancer research in Poland.
“Watching that as a kid and learning about her was so inspirational,” Julia said. “I wanted to go to the Olympics and win and help people out like that.”
Working diligently was an ethic for the family, and Julia applied it in a sport that demands discipline for those who will excel. She really fell in love with competitive swimming when she entered a backstroke race for the first time and discovered she was the only kid who could do a proper flip turn.
“After that, it kind of clicked,” Julia said. “When you’re little, you’re trying to see what strokes you’re good at. That was the turnaround for me.”
At UCSD, Toronczak is among the leaders on a team with 24 people at nationals. Her schedule at the event includes the 200 back, 100 back, 200 freestyle and two or three relay races. Her best individual national finish is fifth last year in the 200 back.
The 200-meter races are particularly brutal on the body, and Toronczak said, “If you don’t feel like you’re going to die at the end of the race, you didn’t swim hard enough.”
Toronczak recently dislocated a rib in training. There is a toughness she possesses, said UCSD head swim coach Daniel Perdew.
“When she’s at her best,” he said, “she just dives in and goes after it.”
Apparently, she can do the same thing at the dinner table. Teammate Natalie Tang recalls meals at which Julia has stuffed an entire piece of sushi in her mouth just for the shock value and to get laughs.
“She’s very dramatic about things like that,” Tang said.
Tang also has watched Julia and Michael interact when the family attends swim meets.
“It’s a really nice dynamic,” Tang said. “You can tell Michael understands Julia’s feelings and she understands his. I wouldn’t say she’s protective, but she cares about how other people interact with him.
“She won’t say it, but I think it’s hard for her when they’re apart. When he’s around, it helps her. She gets centered again. It helps her get her mind off any problems when Michael is around because she is focused on him.”
Julia is more enthused than ever about sharing the twins’ story. She has started a blog called “Beyond the Waves” that documents some of their time together. It is filled with pictures and stories that she hopes will normalize their life and destigmatize people with disabilities.
“I am so thankful for Michael,” Julia said. “He’s taught me patience and how to care for people, how to appreciate the little things in life.”
Michael can only express his feelings for his sister with actions, not words.
“He loves her. I see that,” Grazyna said. “When I tell him we’re going to see Julia, that we’re going to the ocean, the shoes are on and he’s ready to go!”
As Julia rose in swimming, Michael attended special education programs, the smallest steps of progress coming months or years apart. The two didn’t attend school together until reaching West Hills, which has a special education program.
The transition for Michael was rough, but Julia visited him in class when she could and volunteered to be a buddy to students with disabilities. He grew comfortable at school, and they made their way toward Julia’s graduation.
On the day she received her diploma, Julia and Michael both donned caps and gowns, and with the previous day’s practice session to get Michael comfortable, he pulled off his duties without a hitch.
“I think he felt a part of the school being in that huddle of the kids,” his mom said. “I think he was happy.”
Julia had to make a decision on where to go to college, and she considered schools in Northern California. Then her mom went to Poland by herself for a month, greatly upsetting Michael, and when Grazyna returned, her son ignored his mom for a time.
“He didn’t understand why she was gone,” Julia said. “It made me realize I should stay close to home for him.”
Daughter and mother have had some difficult conversations. Grazyna and Zbigniew are 61 years old. They will care for Michael as long as they can, but at some point Julia may have to take on more responsibility. She said she dreams of a life in which she owns a home big enough to include Michael.
Her mother worries.
“I don’t want her to sacrifice for Michael,” Grazyna said. “I’ve talked to her about what I expect from her: Just watch Michael, maybe invite him to some party days or weekends. I want her to have her own family, her own life.”
At La Jolla Shores, to see the twins on the beach is to understand a closeness that doesn’t need words and to be convinced that not much time or space will come between them.
“I don’t know what is going to happen in the future,” Julia said. “But I will stick close to him, and I always want him to be by the water.”
© 2017 The San Diego Union-Tribune
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