Four-year-old Kayden loves soccer and happily kicks the ball around the room as he plays. Unlike other children his age, Kayden has faced various challenges from the day he was born.
“He was four pounds at birth, and spent 36 days in the neonatal intensive care unit,” explained his mother, Linda Marron.
Diagnosed with Down syndrome, he also was born with both a ventricular septal defect (VSD) and Patent Ductus Arteriosus (PDA).
Down syndrome, also known as Trisomy 21, occurs in one of 800 births when a child is born with an extra chromosome. VSD is a congenital heart defect where there is an opening between the two lower chambers. PDA involves an opening between two blood vessels that affects the way blood flows through infant lungs. PDA can cause poor eating, failure to thrive, and breathlessness.
Both VSD and PDA can be common to children born with Down syndrome. Kayden had surgery two years ago to repair the openings, and now his weight is normal for his age.
“He’s actually now getting more heavy – but his favorite food is french fries!” Marron said.
In addition to Kayden, Marron has two other children, a 14-year-old and a two-year-old, who both help teach Kayden as they play together. She first moved to Northeast 25 years ago and now lives in the Blue Valley neighborhood, where Kayden has his own play area in the backyard.
“He loves being outdoors, exploring, he’s very adventurous,” she said. “But every time he went to the park, he would get sick so we made him a safe place to play.”
Kayden attends school at Guadalupe Center’s preschool, where he gets the support he needs to learn to use his speaking device and sign language to communicate, as he is mostly non-verbal.
Another source of support Marron has tapped into is Down Syndrome Innovations and their annual Step Up for Down Syndrome event, which helps families raise funds for additional services.
For this year’s event, Marron has gathered a team of 52 friends, family members, and his teachers from Guadalupe to participate in a one-mile ceremonial walk. Named Kayden Phillip’s Minions, they’ve surpassed their $1,500 goal and raised $1,632.
Step Up for Down Syndrome is in its 29th year. Participants have a variety of activities including bounce houses, carnival rides, pony rides, and live entertainment to choose from. The event ends with the ceremonial walk with 201 teams composed of over 4,000 supporters. Marron and Kayden have participated in the event and walk since he was born.
“Everyone on Kayden’s team will participate in the walk,” Marron said. “At 1:30 p.m., we all line up, and I’ll have him in his wagon. Once we cross the ‘Start’ line and further down, maybe after 10 minutes, I’ll take him out and let him walk and cheer him on as he walks. Of course, Kayden is curious and wanders off the path – he reminds me of Curious George, for sure. When that happens I sit him back in the wagon and once we are at half a mile, we’ll stop and all take a family photo for our family memories.”
For Marron, and Kayden too, the best part of the event is spending the day having fun with their family and friends, who take time from their busy schedules to attend the event.
This year’s Step Up for Down Syndrome Walk will be on October 28, at Arrowhead Stadium’s parking lot C from 10 a.m. to 2 p.m. For more information about the event, visit Down Syndrome Innovations’ webpage at kcdsi.org. To volunteer or make a donation visit stepupwalk.org.