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10 Minutes With: Julia Toronczak

Meet Julia Toronczak and her twin brother Michael, the voices behind the blog (and soon-to-launch jewelry business) Beyond the Waves. Their blog shares everyday stories of their lives and aims to educate us about Down Syndrome. Below, Julia talks about her work in microbiome research, which she has had an opportunity to tie in to the Down Syndrome community, and shares a bit about life with a twin who was born with Down Syndrome and the incredible impact Michael has on her life.

 
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MTEAM: Give us a little introduction to yourself, your twin brother Michael and Beyond the Waves.
JULIA TORONCZAK:
Hello! I’m Julia Toronczak, and my twin brother, Michael, was my inspiration for our blog, Beyond the Waves. It wasn’t until we were born that my parents found out that Michael had Down Syndrome. Although he is severely impacted by it and is nonverbal, he expresses love better than anyone else I know. I recently graduated from UC San Diego in General Biology, where I also competed on the ICA swim team for four years. Michael was one of the biggest reasons why I chose to stay close to home during college, and where his love for the ocean ignited.

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MTEAM: Tell us more about Michael and his personality! What does he love most? What makes him happy? What makes him uniquely Michael?
JT:
There’s nothing that Michael loves more than the ocean. He’s always so entranced by the repetitive motion of the waves hitting the shore. It started as a coping mechanism once I was attending UC San Diego. I lived on campus because of all of our practices, and Michael would come and visit every weekend. He would always be so upset when we would first meet up, but taking him to the ocean would immediately improve his mood.

He also loves going on walks around our neighborhood, and especially loves swimming! We’re both water babies, and whenever it’s really hot it’s always great to take Michael for a swim. I’ll usually place two noodles under his back, and he’ll kick and splash around.

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MTEAM: We love following your journey together on social media. Can you tell us more about how having Michael as a twin brother has influenced your life?
JT:
I couldn’t imagine my life without Michael in it. He’s tremendously impacted my perspective, and the importance of choosing to have a positive outlook on life. We all interpret the world around us in various ways, but we also have the power to control the way we take in everything. He’s reminded me to be grateful for what’s in my life, and to release any judgements around others. I love how Michael encompasses unconditional love -- he doesn’t care about race, gender, sexual orientation, religion, etc. All he cares about is how a person treats him, which reflects how he’ll treat them back.

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MTEAM: What’s a typical day in Michael’s life like?
JT:
Michael absolutely LOVES repetition. If you try and change up his routine, that’s a no-go for him. If he knows you’re in a rush, he’ll move even slower, regardless of how important it is to be on time. He can get dressed for the most part, but we still have to assist him if he gets stuck in a shirt. Although he can brush his own teeth, it’s incredibly important that they’re cleaned thoroughly, since he had open heart surgery as a baby. I recently got an electric toothbrush, so I’ve been brushing them for him so he can get adjusted to that. In a few more weeks, once he’s accustomed to it, then we’ll start teaching him how to use that by himself.

It’s incredibly important to let individuals with Down Syndrome live their own independent lives, and to assist when it’s necessary. If you see someone else who has special needs that you don’t know and think that they’re getting too much help, release those judgements. Oftentimes the family will know what that individual is capable of more than anyone else. As anyone else with Down Syndrome, Michael is incredibly stubborn, and if you try to get him to do something that he doesn’t want to do, then he will NOT do it. With Michael, it takes a lot more time to teach him how to do something than it might for another individual who has Down Syndrome, and that’s okay. We know what is best for him, and he continues to learn how to do things for himself at his own pace.

Now he’s in a day program, so he’ll wake up in the morning and have breakfast, my mom will drive him there, and he’ll spend the day going around the community or helping out with various tasks. My mom will pick him up in the afternoon, and whenever he’s at home he’ll always sit in the same spot on the couch. That’s the biggest thing I’m working on right now, since he’s so stubborn when he’s at home and refuses to get off the couch, except when he needs to eat, go to the bathroom, or go on walks. It’s really important to keep moving around during the day, and sitting can be really dangerous to your health without moving around every so often. On weekends, I’ll usually make him breakfast, and take him on an adventure somewhere-- usually the beach :)

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MTEAM: What have been some of your biggest challenges and the best rewards along your journey with Michael so far?
JT:
Growing up was really interesting, since Michael didn’t speak in words, and we didn’t play around with video games, or any board games like other kids did. It forced me to find other ways to interact with him, which included reading, playing outside, teaching Michael how to kick a soccer ball, etc.

I love how much Michael continues to educate me about life. Individuals who have Down Syndrome teach you incredible life lessons that you’ll learn no where else. I always say that no matter how many schools I attend, Michael will continue to teach me more about life. He continues to teach the importance of compassion, patience, love, gratitude, perspective, and so much more.

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MTEAM: In a recent newsletter, you wrote: “Even though Down Syndrome is the most commonly occurring chromosomal condition (about 1 in 700 babies) it's the least funded genetic condition in scientific research.” Tell us about the research you’re currently involved in and how it can potentially help people with Down Syndrome in the future.
JT:
Rather than “curing” Down Syndrome, I aspire to find a means of improved public health recommendations for these individuals that could stand to improve their quality of life. I’m really grateful for the opportunity I’ve been given to work in the Knight Lab in the Department of Pediatrics, in the School of Medicine at UC San Diego. It was co-founded by Drs. Rob Knight, Jack Gilbert and Jeff Leach; the project is actively run by the Knight Lab. Rob Knight’s lab is a leader in microbiome research, having held key roles in foundational projects such as the $173 million National Institutes of Health’s Human Microbiome Project. His lab develops both the software for analysis and the molecular protocols that enable microbiome research.

Little research has been done around the Down Syndrome population and the microbiome, so it would be really exciting to develop a baseline considering Down Syndrome has a lot of co-morbidity with heart defects, infections, celiac disease, and other diseases we already have microbiome information from. The American Gut Project, based out of our lab, is the world’s largest crowd-sourced microbiome research project, and the largest public human microbiome study to be published to date. We recently created a Down Syndrome cohort, which allows individuals with Down Syndrome to claim a free kit, thanks to the donations of others.

Beyond just the microbiome, Down Syndrome has a lot of research potential, and could give us some answers in cancer or alzheimer’s research as well. You can read up more information regarding this, and find out how to donate to our project here.

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MTEAM: One of your missions with Beyond the Waves is to educate. What would you tell parents who have just found out about a Down Syndrome diagnosis? What else would you most like people generally to know about Down Syndrome?
JT:
I’m not going to lie, it’s a really difficult journey. But I believe that the best paths in life tend to be the most difficult ones. They’re the ones that test our integrity and promote tremendous growth. I wouldn’t want to meet the person I’d be if I didn’t have a brother with Down Syndrome. As I said before, individuals who have Down Syndrome can teach you more about the beauty in life than anyone else.

Many individuals who have Down Syndrome can live independent lives, and are not a “hassle.” I am continuously inspired by these individuals and the light they offer to the world. That’s why it’s so important to continue raising awareness regarding Down Syndrome and special needs in general, since there’s such a negative stigma surrounding this population. The more we share our own beautiful stories, the more we can enlighten the perception of special needs.

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MTEAM: You’re about to launch a jewelry business to raise awareness about the beauty of Down Syndrome. Congrats! Tell us about the jewelry you’ll be selling and how you’re tying it all in with your goal to spread awareness of Down Syndrome.
JT:
I’ll be selling handmade jewelry made by myself that incorporates our blog, love of the ocean, or Down Syndrome. Some of the proceeds will be donated towards Down Syndrome research (still in the process of choosing an organization), to help raise awareness of how important the Down Syndrome community is in research.

Did you know that individuals who have Down Syndrome are protected from coronary artery disease, hypertension, and most solid tumors, including breast, colon, and skin cancers? Interestingly enough, scientists have discovered that individuals who have leukemia but do not have Down Syndrome end up having a part of the 21st chromosome amplified, which may carry a “leukemia oncogene.”

Just 30 years ago, the average life expectancy for an individual with Down Syndrome was around 25 years. Now, thanks to advances in research, that number has jumped up to about 60 years.

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MTEAM: What advice would you offer to anyone who has an opportunity to meet someone with Down Syndrome for the first time?
JT:
Just go ahead and introduce yourself! These individuals love getting to meet others, and interacting just like any one of us would. I always encourage others to go up and introduce yourself, and offer a handshake or a high five, even if the other individual can’t speak. I always love it when people introduce themselves to Michael, and you can tell that he loves it too :)

One of my previous posts gives additional advice regarding how to approach someone who has special needs, if you would like to find out more.

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MTEAM: If there was one thing you’d most like the world to know about Michael that you haven’t said here already, what would it be?
JT:
Michael is just like you or me. He feels the same emotions that any of us do, and can have great days and off days too. Because he’s nonverbal, he just needs to find other ways to express himself. I am continuously inspired by how blindly he loves others, which I believe is really important for our society today.

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Want to connect with Julia and Michael? Here’s where you can find them:

Beyond the Waves Blog
Instagram
Facebook
Twitter
Shop
Research Info
DS research cohort donations

Candyce Carragher