Kailani’s Story

More than Amazing

Nine-year-old Kailani can be described many ways: outgoing, friendly, fearless. But the word she likes best is “amazing” because it reminds her of the beauty contest she won earlier this year, the New Jersey Miss Amazing Pageant. The pageant is for girls and women with disabilities and encourages participants to show off their personality, as well as their looks and talent.

“Kailani was named queen in the pre-teen category,” says her mother Quetcy. “She got a trophy, a sash and a crown. She was so proud!”

And now Kailani has earned another honor: She’s a Champion for the CHOP Buddy Walk® & Family Fun Day, where she’ll represent thousands of other kids with Down syndrome at a festive event on Oct. 6 at Villanova University Stadium.

It’s just the latest honor for Kailani, a bouncy girl who rarely stops moving and loves being the center of attention.

Parents Quetcy and Steve learned their daughter would have Down syndrome (trisomy 21) before she was born, but quickly decided to let Kailani tell them — through her words, gestures and moods — what she needed and when. The couple have made it their mission to treat their daughter like any other child: They have goals and expectations for Kailani, but also give her the space and time to meet her milestones.

Dealing with medical issues

Kailani has had a host of medical issues — including gastrointestinal, pulmonary and cardiac — since she was a baby and has been treated by multiple specialists at Children’s Hospital of Philadelphia (CHOP). Her long-term care is coordinated by CHOP’s Trisomy 21 Program.

As a baby, Kailani repeatedly aspirated during early feedings. Doctors encouraged the family to have a gastrointestinal tube (g-tube) placed so she could receive nutrition safely through the tube and avoid any breathing issues. Kailani received her food via g-tube for about two years.

When Kailani was 4, she began coughing up blood. Her parents rushed to the Emergency Department, where doctors initially suspected a virus. But quickly they discovered Kailani had something far more serious — pulmonary hemosiderosis, a rare disease that causes bleeding in the lungs and can lead to lung disease. To treat the condition, Kailani received five blood transfusions and supportive respiratory therapy.

Soon after, doctors discovered Kailani also had mitral valve regurgitation, a condition in which the heart’s mitral valve doesn’t close tightly, allowing blood to flow backwards into her heart. Thankfully, the condition hasn’t caused any problems yet for Kailani, so doctors are holding off on surgery to repair it for now.

Kailani continues to see specialists from pulmonology, rheumatology, cardiology and endocrinology, along with her core Trisomy 21 Program team.

Always active

Despite her health challenges, Kailani is a super active kid who’s almost always moving, singing, dancing and talking. She is warm and welcoming, and doesn’t hesitate to talk to new people or ask any DJ to play her favorite songs: All About the Bass and Watch Me (Whip/Nae Nae).

“She’s so upbeat. Every day she wakes up on 10,” says Steve, Kailani’s dad. Kailani loves learning new things — especially new ways to have fun, says Quetcy.

“This summer she had swimming lessons and learned how to do a handstand in the pool,” Quetcy says. “We’re also planning a dance party for her 10th birthday in October.”

Kailani loves school and is looking forward to beginning third grade in her multi-disabilities class near her home in Willingboro, NJ. She enjoys math, but continues to struggle a bit with reading. At school, she receives occupational therapy, physical therapy and speech, and after school participates in dance classes and Special Olympics. This fall, she’s hoping to start gymnastics.

“Kailani is excited for the new school year and seeing all her friends again,” Quetcy says. “She remembers all of their names and if someone is having a bad day, she gives them a great big hug. She’s very empathetic.”

Future is bright

The future is wide open for Kailani. Her parents have a few ideas about careers she may want to pursue — professional singer, journalist or nurse — but Kailani is still young and a lot may change in the next 10 years as far as her interests go.

“Kailani’s future is bright,” Steve says. “I could see her in her own house (next to ours, of course), going to work as maybe a nurse, being successful and happy. That’s my hope for her: to carve out her own niche in this world and to be happy.”