Trinity Keel is patiently sitting on the couch in her living room, waiting for little sister Avery to join her.
Family photos fill the neat-as-a-pin home in Grain Valley, featuring Trinity and Avery and their brothers, Brizden and Alijah. Avery soon joins big sister and the real fun begins. Avery keeps teasing Trinity, offering her a sucker, then pulling it away.
Their mom, Misty Jaklevich, grins at the shenanigans.
“They love each other so much,” Jaklevich said, “there’s a lot of love in this house – and a lot of faith. If there wasn’t, well, I don’t know what we’d do.”
To any bystander, Trinity would appear to be a normal 12-year-old who is excited about summer school, who loves the new Disney film “Aladdin,” and would rather play softball or go swimming “than anything else in the world!”
But on this sunny Wednesday afternoon, Trinity is home because her summer school class is taking a trip to a nature park that would have been too challenging for the youngster to join.
She suffers from a genetic disorder called greig cephalopolysyndactyly syndrome, which affects the development of the limbs, head and face. She spends much of her life in and out of her wheelchair or stroller.
She also deals with scoliosis, epilepsy and has a ventriculoperitoneal shunt implanted in her brain to relieve pressure caused by fluid accumulation. The shunt is a lifesaver, but it failed to work on her 11th birthday, causing some anxious moments for her family.
“She has had four brain operations, all associated with the shunt, which removes fluid from her brain that the brain can’t remove itself,” Jaklevich explains.
“On her 11th birthday, the tube that transfers the fluids from her brain to her intestines got clogged – it was serious, very serious – and she had to have emergency surgery.”
Trinity listens to her mother with the same reaction most children might have if their mom was reading a grocery list.
“I’ve had a lot of surgeries,” Trinity said, as Avery waved her sucker under her nose. “A whole lot – but I’m used to them.”
When asked about the surgeries, Jaklevich begins to read off a list of procedures.
“She’s had three foot surgeries – one to separate her toes, one to reconstruct the bones in her feet and release tendons, and one to repair a tendon in her right foot.”
“Then there have been all the brain procedures and, oh, well, she had her tonsils out. But when you compare that to the other procedures, that seems like nothing.”
Trinity nods in agreement, giving a thumbs up – which causes her mom to break into laughter.
“I’m just a kid and I like to have fun,” said Trinity, a star on her Exceptionals softball team, which allows children with medical issues to play with the help of an able-bodied buddy.
Trinity played her final game of the season Monday at the Kansas City Royals Urban Academy, and her buddy was Blue Springs South state championship softball standout Regi Hecker.
“I loved her,” Trinity said of Hecker. “She was so nice. She was one of my best buddies. I hope she can be my buddy again.”
When that message was relayed to Hecker, her heart melted.
“I loved Trinity, even though we just spent an hour together, I was amazed at how strong she is and how much she has had to overcome,” Hecker said.
Trinity went to the plate in a wheelchair that Hecker pushed. They then ran around the bases, with Hecker manning the wheelchair.
“Trinity makes me love softball even more than I did before I was her buddy – and I love softball,” the state champ said. “Sometimes we forget how lucky we are. When I get down, I’m going to think of Trinity and what it meant to spend that hour with her. She’s amazing, and I feel blessed to have met her.”
That’s a comment Jaklevich hears from many who meet her daughter.
“Let’s be honest, it’s tough,” Jaklevich said. “I’m a stay-at-home mom with four kids, and my husband, Jake, is amazing. He works hard so I can stay home with the kids.”
“And we think Trinity is our little miracle. She is so brave and so strong and you’ve been around her the past couple of days. She is always smiling and so positive.”
But there is the occasional down day, when mom and dad and her brothers and sisters have to let Trinity know that she is loved.
“I know my family loves me,” Trinity said, as Avery sticks her sticky sucker in Trinity’s hair. “And I love them. But there are days I wish I could just go swimming on my own or play softball with the other kids.”
“That’s why I love the Exceptionals so much. I can go somewhere and play softball and no one asks me what’s wrong with me. I get tired of answering that question.”
That remark elicits a deep sigh from her mother.
“There have been one or two girls who said mean things to Trinity, but for the most part, school has been great. The teachers have been wonderful, but, like Trinity said, there are questions – lots of questions – and they come from the kids and the teachers. I’m proactive and open. I’ll be the first parent to speak up, and I’m always going to be there for all my kids.”
“But it’s tough. She just wants to be a little kid, but she handles it all so well.”
When asked what a dream day would be, Trinity pauses, and then smiles.
“Swimming and playing softball and going to see ‘Aladdin,’” she said. “That would be the perfect day.”