Upcoming World Down Syndrome Day
Four-year-old Kennedy Bodurka. Photo submitted
Vermilion’s Kim and Kurt Bodurka are looking forward to celebrating World Down Syndrome Day on March 21. According to https://cdss.ca/, 45,000 Canadians live with Down syndrome. There are three types of Down syndrome; Trisomy 21, Translocation, and Mosaicism, and people with the most popular (Trisomy 21) have an extra 21st chromosome. The Canadian Down Syndrome Society also states that one in 800 births results in Down syndrome, and that it’s a genetic condition not a disorder, illness, or disease. “We are celebrating to bring awareness to Down syndrome and support our four-year-old son Kennedy,” said Kim Bodurka. She went on to say that Kennedy’s case was unique because he had not been diagnosed until he was over a year old. Kennedy was 9 lb. 14 oz at birth, had to be resuscitated and was jaundice. From then on, he was a good baby and at health check-ups the couple were only encouraged to feed him more due to his ranking on regular growth charts. At the time of his first year needles, he was flagged for early intervention (due to his size). “Afterward, I searched Google and found the Down Syndrome Clinic at the Stollery Children’s Hospital and called them directly to get an appointment. We were told he could have been in heart failure,” said Kim. Because of his incredible flexibility they were told that Down syndrome was a possibility, but they did genetic testing to find out for sure. Even after a positive diagnosis, Kennedy had to wait one year to get his heart tested; his heart was perfect. “At first, we were adjusting and asking ourselves, ‘What will we do for school or services with nothing around here? What is he going to be like when he grows up? Will we have to move from here; the place we were raised?’ After attending workshops at the Edmonton Down Syndrome Society, we felt much better. “You go through stages of grief, but now I am loud and proud! We feel we had the advantage of not knowing for a year because we got to know Kennedy as himself and not his disability. As a result, we continue treating him like a typical kid because we don’t know how to treat him any differently. We will never know if he is doing so well because we treated him like a typical kid for the first year but I believe it had something to do with it.” said Kim. His Doctor at the Stollery has been so great with us, and does a lot of doctoring over the phone which is a big help. Everyone has been very supportive,” said Kurt Bodurka. Now, Kennedy continues to work on his delayed speech, but so far his vision is perfect, and he is not celiac. He continues to go for hearing tests every six months, and sees a pediatric ophthalmologist yearly. He currently weighs the same as his younger sister, Reese, but they are over two years apart (children with Down Syndrome have a different growth chart, and according to that, Kennedy is above average). Kennedy attends Brighter Beginnings four days per week for speech therapy, occupational therapy, and physical therapy. He is also enrolled in his second year of dance lessons at Dance Impression by Ryan. “Originally, Kennedy did not like crowds, but he was able to participate in the year end recital. I think it has helped him come out of his shell,” said Kim. “Vermilion has been so supportive. We are thankful to Susan Kern for welcoming him at Brighter Beginnings; it’s an amazing program. It gave us a ray of light that he can be in school right until graduation. We are also thankful to Miss. Ryan Wilson for helping him to keep active and strong,” said Kurt. “He signs, ‘Please,’ and, ‘Thank you,’ at Cornerstone Co-op when receiving a cookie, and the staff engage by signing back to him,” added Kim. “On a personal level he has taught us so much, for example, patience,” said Kurt. “His sister has also helped him develop; they are inseparable. He loves dressing up. He’s got the best imagination I’ve ever seen,” said Kim who also noted that his expressions and joy are overwhelming. She suggested for people to treat others normally and to participate in Rock Your Socks on March 21, to show that people with Down syndrome are more alike than different. The date signifies 3 - 21 to celebrate those with three of the 21st chromosome, and is a campaign to create conversation about diversity, uniqueness, inclusion and acceptance. Participants around the world are simply asked to wear different socks on that day; they could be bright or colourful, short or long. “I want to educate people. We love our son, and my hope is that even one person struggling with the idea would choose not to terminate their pregnancy as a result of a Down syndrome diagnosis. The more people talk about it the better. They say that if you are a family of a child with Down syndrome, that you are one of the lucky few. It is absolutely true, and we have gained so many friends as a result, as well as become better parents,” said Kim. For more information, you can visit www.edss.ca, www.cdss.ca or ndss.ca. You can also follow #downsyndromenotsodown, or search@321joyshop on Facebook.
Kennedy Bodurka had a blast at Vermilion's Kiddie Oasis on February 25. Photos Angela Mouly