On a good day, Katalina Litchfield is a 6-year-old ball of fire, chattering nonstop about her school, jumping and bouncing, hamming it up for someone with a camera.
On a bad day, the swelling in her joints keeps her home from school. Or, perhaps the pain is so intense that she needs to make yet another trip to Connecticut Children’s Medical Center in Hartford, where doctors use her chest port to deliver infusions of medication.
But one of the things that gets the Moosup first grader through the bad days is her new title, Tiny Miss Connecticut. She and her family are working toward financing a trip to Branson, Missouri, where Katalina will represent the state in the Princess of America National Pageant.
“She can’t do a lot of fun activities,” said Theresa Litchfield, Katalina’s mom. “We wanted to show other children with other medical conditions like her that it’s okay to follow your dreams.”
At age two, Katalina was diagnosed with common variable immune deficiency (CVID), an antibody deficiency that leaves her susceptible to a host of infections. She suffers from inflammation and swelling in her joints, as well as intestinal swelling, an indicator for Crohn’s-like disease.
Periodically, she receives infusions of intravenous immunoglobulin derived from the plasma of as many as 1,000 separate donors. The treatments help some symptoms, but leave her with side effects ranging from headache, fatigue, joint pain, and muscle cramps.
“School is a treat for her. It’s a place where she can be herself,’ said Theresa. “School is what keeps Katalina feeling like she’s normal.”
But medical issues have caused her to miss six weeks of school so far this year.
“She’s hospitalized often” said Theresa. “She has bad days when she wishes she wasn’t here. It breaks my heart. Not knowing her future is probably the hardest thing for me as a parent. I’m learning as I go, to be honest.”
Katalina’s pageant dream grew out of a family project of helping other families with seriously ill children. For years now, the Litchfields have adopted families they’ve met at CCMC for Christmas, collecting toys and gifts and delivering them, along with a Christmas dinner, to the families in person.
Last year, one of their “adoptees” was Tiny Miss Massachusetts, a girl named Emily. The two girls hit it off immediately.
“She put her crown on Katalina,” recalled Theresa.
Needless to say, Katalina was enthralled. Mother and daughter talked about it, and they decided to take the plunge into the world of pageants.
The Princess of America pageant program is open to girls age four through 24, said National Delegate Coordinator Marissa Foli. Contestants in the national pageant are judged on an interview, a personal introduction, and formal wear.
“Over half of their score is based on speaking and communication skills,” Foli said. “It really gives all these girls a leg up when it comes to interviews for a job.”
She said the pageant is less appearance-driven than many, with winning “princesses” in a diversity of skin colors and sizes.
“It’s not the look, it’s the girl that captures the judges’ hearts,” she said.
While some states conduct a Princess of America pageant to choose a state winner, Connecticut’s title holder is chosen by application, said Theresa. Katalina’s Tiny Miss division includes four- through six-year-olds.
“There’s no makeup for her age group, which I’m okay with,” she said.
Katalina already has two dresses for her competition.
“We got a blue one and a pink one,” she said. “Me and my mom practiced some walking. Sometimes you have to turn and wave and blow a kiss.”
After their years of conducting toy drives for others, the Litchfield family is hoping to raise money for their Missouri pageant expenses through crowdsourcing.
A GoFundMe page, “The Road to Nationals,” is up and running with a goal of $3,500 to cover travel and hotel expenses, meals, pageant fees and clothing.
In the face of a dizzying array of medical issues, Theresa said she hopes the pageant will give her daughter a glimpse of normalcy and a dream to shoot for.
“I pray that this will give her the confidence that it’s okay to have a chest port. It’s okay to be different,” she said.
