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Reprinted from 3.21: Canada's Down Syndrome Magazine (Issue #6: Celebrating Our Connections). Click here to download the full magazine. Last fall, in the throes of a global pandemic, the world was captivated by a much happier story when Chris Nikic became the world’s first athlete with Down syndrome to become an Ironman. Chris has inspired thousands of people – those with disabilities and those without – to get off the couch and reach for their dreams. 3.21 Magazine had a chance to chat with Chris and his father Nik. Below they tell us about their “1% Better” philosophy and all that went into Chris’ incredible accomplishment. 3.21: Let’s start at the very beginning, Nik. Describe Chris’ early development. What was it like teaching him skills like walking, swimming and riding a bike? Nik Nikic: It was very difficult. Everything was so hard and took so long to learn, even the most basic things. He didn’t learn how to ride a bike until he was 15 and that took six months of practice before he could balance himself. 3.21: What were your hopes and dreams for Chris as he was growing up? NN: In hindsight, they were pretty limited. We had accepted the lie that our son could not achieve much. We wanted a normal life for him, but didn’t believe it was possible. Now we believe anything is possible. 3.21: Chris, growing up, were you always interested in athletics? What sports did you enjoy? Chris Nikic: Basketball. I love to play basketball. I don’t know why; I just love it. Maybe because I watched my sister and I wanted to be like my sister Jacky. I beat my dad every day. I also enjoy golf. One of my goals this year is to break 80 in golf. I’m practicing multiple times a week outside of my Ironman training. 3.21: For those who aren’t familiar with the Ironman competition, what does it consist of? CN: Ironman is a 140.6 mile do you want to note these in Kms, for example (225.3 km), 17-hour event with a 2.4 mile swim, a 112 mile bike ride, and you finish it off with a 26.2 mile marathon run. 3.21: Of the three components – swimming, cycling and running – which is your favourite, and which is the most challenging? CN: My favorite is the run. The most challenging part is the bike. Sitting for eight hours makes my hands and butt hurt. I have to work extra hard for it because I have poor balance, and it is also hard to train for eight hours at one time. 3.21: Tell us about your progression towards becoming an Ironman. Did you compete in other events before entering the Ironman? CN: In March 2019 I competed in a Special Olympics sprint triathlon and the gap between me and first place was 75 minutes. I competed again in August 2019 at the state championships and I finished last, but the gap was only 25 minutes. In January 2020 I did a 33-mile Olympic distance, and on May 9 I did a half Ironman, which was my true test. The real race was cancelled because of COVID-19, so we just decided to schedule our own for that same day. I finished it in 8 hours 25 minutes. 3.21: You started out in Special Olympics, but eventually you also began competing in mainstream athletic events. Why was it important for you to take this step? CN: It was important for me to take that step to show others like me that we can do the impossible one year, and then next year we can do something even more amazing. This will help them believe they can do it too. The best thing I can do for others like me is be an example, show them that we can do anything if we are willing to work hard and get 1% better each day, and that we are capable of doing more than one thing. 3.21: What is it about the Ironman challenge that appealed to you? CN: I wanted to be a world champ at something so on New Year’s Eve, my dad asked me to write down my dreams. I wrote down that I wanted to buy my own car, buy my own house and marry a smoking hot blonde like my mom. I also wanted to show others like me that we can do anything as long as we focus on our dreams. So, my dad got me to focus on my dream, and that has helped me to achieve my goal of doing an Ironman. I like triathlon events because they are fun, but Ironman was a way to get my dreams. 3.21: Describe your training regimen leading up to the competition. CN: I train three to eight hours each day, six days a week. Over the course of those six days, I run three times, bike four times, swim four times, and do strength training three times. Plus, I do stretching and recovery every day. 3.21: Nik, how did you encourage Chris to keep up with this grueling routine? NN: By doing it with him and making everything fun. We found ways to make it fun, reward him for his efforts and help him keep growing. 3.21: During the race, were there times you felt like giving up? If so, how did you keep pushing forward? CN: At mile 40 on the bike, I got attacked by fire ants. My leg swelled up and it was painful, but I kept going. Then on mile 50, I crashed my bike and I was bleeding and in pain, but I kept going. The hardest part for me was mile 10-13 on the run. The pain was really bad. Everything hurt. I was ready to quit, but my dad came, gave me a hug and asked me, “what’s going to win: my fake pain or my dream?” I said, “My dream,” so I kept going and my angels took me to the finish line. 3.21: Describe how you felt as you crossed the finish line. CN: I was tired, in pain but happy it was over. I was excited to hear Mike Reilly say, “Chris Nikic, you are an Ironman.” That was amazing. 3.21: Nik, what did it mean to you as parents to see Chris accomplish something so monumental? NN: It means that he can live a life of independence, take care of himself, have a family and live an amazing life. It also means he can help others like him and other parents like us to believe in their children's future. 3.21: Chris, how did the other racers respond to you? CN: They were so happy and supportive of me. They all came and hugged me and told me they were proud of me. 3.21: What personal qualities were most important in enabling you to achieve your goals? CN: Being a boy with Down syndrome who had big dreams! Because doing Ironman means I can do anything, I can get my dreams, I can be included in everything. I also love spending time with people and making new friends. The people and the races are so much fun that I will do the work. My best quality is I don’t quit. Other people quit when the pain comes; I don’t quit. I keep going. 3.21: What does it mean to you to be the first Ironman with Down syndrome? CN: It means that no matter the obstacles, you can accomplish your dreams if you’re willing to work hard. It means proving to others like me that we can do what others can do, and being the first means showing them anything is possible. 3.21: Do you plan to compete in more Ironman events in the future? CN: Yes, I am competing in the championship Ironman in Kona Hawaii in October 2021. I will also do some other events to prepare for that race like a half marathon, a full marathon, and a half ironman. 3.21: Your story has generated international interest. What kind of opportunities have come your way since the race? CN: It’s been freaking amazing since the race, I’m so blessed. Special Olympics has been amazing. They made me a Champion Ambassador and gave me the Florida Hero award. They invited me to the USA Games and I got to meet Governor DeSantis. Ironman has also been amazing. They offered me a global ambassadorship and invited me to compete in Hawaii. Plus, they did an NBC documentary about me. Disney gave me a hero's welcome, and Universal gave me a private VIP tour. The Tampa Bay Buccaneers gave me a special football, and Orlando City Soccer gave me special recognition. Sports Illustrated nominated me for Inspirational Story of the Year. I got a book offer and a sneaker deal – and Guinness gave me a new world record! This has also given me the opportunity to become a motivational speaker. I can now use my story and speaking ability to share a message of awareness and inclusion and hopefully help make the world a little better by being a good example of what is possible. 3.21: You are an inspiration to so many people, and especially to others with Down syndrome. What would you say to somebody who is working to achieve a major goal? CN: I did not do anything spectacular. I just got 1% Better every day for two years and I went from couch to Ironman. So, anyone who wants to accomplish something great, you just have to be willing to be consistent for a couple of years and you can do amazing things. The easiest thing to do is quit. The hardest thing to do is just keep improving every day. I used my dream to keep me going. If you want to do something big, then start by writing down a BIG dream and look at it every day. Never take your eye off your dream. 3.21: Nik, what have you learned as you have seen Chris achieve his dream? NN: We learned that individuals with Down syndrome can achieve amazing things but their potential has been locked by the world's perceptions and limitations. We have learned that anything is possible for someone who is willing to get 1% better every day and work hard for their dreams. 3.21: Last word to Chris. Now that you’ve proven that you can accomplish anything you set your mind to, what are your goals for the future? CN: This year I will learn to drive my own car, but my next big goal is to do Ironman Hawaii. In 2022, I want to do the Special Olympics USA games. In 2023, I want to do the World Games in Germany. Chris Nikic will serve as Race Ambassador for the Down Syndrome Resource Foundation’s Run Apart for Down Syndrome presented by Euro-Rite Cabinets. Join Chris in empowering people with Down syndrome to make their own dreams come true by joining the virtual run at
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Latest News

DSRF's intrepid reporter brings both information and comedy in the latest edition of DSRF News with Andrew Bingham. Here's what's up in the month ahead at the Down Syndrome Resource Foundation.
Longtime DSRF supporter the Edith Lando Charitable Foundation has donated $4,000 to our educational programs for children and youth with Down syndrome. The Foundation is dedicated to building the self-esteem of young people, and they are certainly growing the confidence of DSRF’s students. Thank you!
Spring has sprung and COVID-19 vaccines are now available for BC adults with Down syndrome! Andrew brings you up to speed on all this and much more in the April edition of DSRF News with Andrew Bingham.
UPDATE: March 26, 2021 - COVID-19 Vaccination Prioritization for People with Down Syndrome Ages 16-18 in British Columbia We have received clarification regarding COVID-19 vaccines for individuals with Down syndrome ages 16-18, who seemingly fell through the cracks in the BC guidelines released on March 23 (see below). "Clinically Extremely Vulnerable" (CEV) letters will now be sent not only to those who are currently receiving CLBC support (ages 19+), but also to those who are currently 18 and have already received approval for CLBC services once they turn 19. Please click here to read an announcement from our partners at CLBC for full details. For those with Down syndrome in the 16-17 age range (or 18-year-olds who aren't yet approved by CLBC), we recommend seeking a doctor's order for immediate vaccination. This is consistent with the government's previously published guidelines suggesting that if you are not on the CEV list but believe you should be, to go to your personal physician for assistance. We have been told that if a doctor orders a vaccine for a person 16-18 with Down syndrome, they will be able to book an appointment. UPDATE: March 23, 2021 - COVID-19 Prioritization for Adults with Down Syndrome in British Columbia Today, the Province of BC provided clarification on who is included in the “clinically extremely vulnerable” category of the Phase 3 COVID-19 vaccination group, and specifically who qualifies as having “significant developmental disabilities that increase risk.” They also announced when and how this group can begin booking vaccine appointments. Here is what we know, along with our interpretation and a few questions for which we are trying to find answers. QUALIFICATIONS: “You have a significant developmental disability, such as adults with Down syndrome and other conditions, that is significant enough that you require support for activities of daily living and you use or receive support from: Community Supports for Independent Living (CSIL), Community Living British Columbia (CLBC), or Nursing Support Services program for youth aged 16 to 19.” DSRF Interpretation: Based on the above, all adults with Down syndrome who are 19+ AND are registered with CLBC or CSIL are eligible. We are seeking clarification on whether adults with Down syndrome aged 19+ who do not receive support from CLBC or CSIL are eligible, and also on whether youth with Down syndrome aged 16-18 who do not receive Nursing Support Services are eligible. We will post this information as soon as we have it. DATES AND PROCESS: If you're on the clinically extremely vulnerable (CEV) list, you will receive a patient invitation letter. The letter will be mailed to your home address on file with your Personal Health Number. Letters will be mailed starting March 24 and should arrive by April 15. People who are part of the CEV list are likely to have received or continue to receive care from special clinics or programs; have had indicative medications prescribed; have used hospital services; or have had other interactions with similar programs and services that have all enabled the government to identify individuals who are CEV by the data available. ONCE YOU HAVE RECEIVED YOUR LETTER: Starting March 29, you can call your health authority to book a vaccine appointment (the phone number will be listed in your letter). Before you call, we recommend you review information from the BC Centre for Disease Control on the planning, timing and safety of the vaccine with consideration of your health condition. When booking your appointment, you'll be asked to provide: First and last name Date of birth Postal code Confirmation you have received the patient invitation letter Contact information (email you check regularly or phone number that can receive text messages) Personal Health Number (found on the back of your B.C. driver's licence, BC Services Card or CareCard) IF YOU DON’T RECEIVE YOUR LETTER: If you're on the clinically extremely vulnerable list and you haven't received your patient invitation letter by April 15, it may be because: You recently moved to B.C. You had a treatment in another province You don't get medication through the BC PharmaNet system Your home address on file is outdated Starting April 15, you can try booking an appointment using the online Get Vaccinated registration and booking tool or call centre. Using your Personal Health Number, the registration system or phone agent will confirm if you're eligible. If the registration system doesn't confirm your eligibility and you believe you should be included on the clinically extremely vulnerable list, you can contact the provincial call centre or visit the provincial online registration and booking system, scheduled to launch on April 6, to confirm if you are on the CEV list. If you are not on the CEV list, you can reach out to your physician or nurse practitioner about your eligibility. There is still opportunity for people to get on the list if you fulfill the definitions of one of the CEV conditions (through review with your physician). WHAT TO EXPECT AT THE VACCINE CLINIC: You must bring your patient invitation letter and your Personal Health Number to your appointment. Get ready for your appointment: Wear a short-sleeved shirt and a mask Arrive a few minutes before your scheduled appointment time You can bring one person with you for support. All clinics are wheelchair accessible. You will be provided a mask if you need one. At the clinic you will: Complete a check-in process Get either the Pfizer or Moderna vaccine dose. A choice will not be offered. Wait in an observation area for about 15 minutes You can expect to be at the clinic for 30 to 60 minutes in total Stay tuned to @DSRFCanada on all major social media platforms for further information as we receive it. --------------------------- January 14, 2021 In light of scientific evidence that individuals with Down syndrome are at four times higher risk of hospitalization and ten times higher risk of death from COVID-19 than the typical population, the Down Syndrome Resource Foundation has appealed to the Government of the Province of British Columbia to recognize people with Down syndrome as an increased risk group, and to prioritize them in COVID-19 vaccine distribution. Specifically, DSRF strongly recommends that adults with Down syndrome over the age of 40 be considered high priority for vaccination, and we believe this is consistent with the province's strategy of reducing deaths first. In addition, for both physical and mental health reasons, DSRF recommends that individuals with Down syndrome between the ages of 16 and 39 be given priority consideration. Those in this age group are also known to have associated immune dysfunction, congenital heart disease, and pulmonary pathology. Additionally, developmental disabilities are a common characteristic of Down syndrome, which makes this population especially at risk of pandemic-related mental health problems. Click here to read DSRF's full letter to the Province of BC DSRF CEO Wayne Leslie appeared on CBC News Network on January 16, 2021 to discuss this important issue. Here's the segment: 
3.21 Magazine
Down syndrome information and inspiration for Canadians
Down Syndrome Resource Foundation
1409 Sperling Avenue, Burnaby
British Columbia, Canada
V5B 4J8

Fax: +1 604 431 9248
Phone: +1 604 444 3773