EDITOR’S NOTE: Matt Crawford is a parent of a child who goes/went to school with Kaylee. I have known him and his heart since we were children growing up in the same Westside neighborhood. He offers a little perspective of how special this child is and what she means to her classmates.
Written by: Matt Crawford
I wanted to share some of my favorite Kaylee stories at a time when she really needs the community to lift her up. But first, I’d like to share some background information. My oldest daughter Mallory is in the same grade as Kaylee at the same school. She has been a part of our lives since their Kindergarten year. I had heard of progeria, but didn’t know much about it at the time. I quickly got up to speed to keep up with the little dynamo that is Kaylee Halko. #WeLoveYouKaylee
It was obvious that Kaylee was different, and needed special help to get through her days at school. It didn’t seem to faze her classmates whatsoever, including my daughter, who was in the same class as Kaylee when they were in Kindergarten. Kaylee was very well-known and popular, well on her way to becoming the local celebrity that she is.
Soon after they started primary school, the documentary “6 Going on 60” was released on TLC, which featured Kaylee and her family, as well as another family with a daughter about the same age as Kaylee that also had progeria. It was fascinating to see how these families lived their lives: normal in many ways, but with extra care in so many others. One example was the ‘dry run’ that Kaylee had to perform to make sure she could get on and off the bus effectively prior to attending Kindergarten. You could see the balance of cautious optimism and nervous energy in Kaylee’s mom as she witnessed this test. What so many parents take for granted often qualifies as a milestone to the Halko family. We had the documentary on DVR, and whenever we were deciding what to watch on TV, my daughters would often suggest: “Let’s watch the Kaylee Show!” #WeLoveYouKaylee
The Halkos started “Kaylee’s Course”, the 5K race which is a fundraising vehicle for progeria research. It continues to grow, but one of the neat benefits is seeing the other progeria families that travel to the race to participate. Watching these children interact with each other is so awesome to see! The other families look up to Kaylee, as ironic as looking up to a child that is so small can be, to see how she embraces life. The Halkos provide the ‘blueprint’ on how to raise a child with progeria, with other progeria families watching and learning what they do. #WeLoveYouKaylee
Kaylee has an abundance of personality, and is not shy at all. If you ever think that kids shy away from her because of her condition, that she is a loner, she actually has the opposite problem. She attracts kids like a magnet. It’s not unusual for Kaylee to have a posse of children milling about around her, whether it’s at Movie Night, the Father-Daughter Dance, or pretty much any school function. #WeLoveYouKaylee
Kaylee also dances at the same studio as my daughters. It’s a great way for Kaylee to get some exercise, bond with other girls her age, and participate in something fun, too. I’m sure the costumes they get to wear at the recitals are icing on the cake. The owner of the dance studio has helped with progeria research fundraising efforts, and Kaylee is always the one to draw the winning 50/50 ticket out of the bucket at each recital. I look forward to witnessing that every time I attend. #WeLoveYouKaylee
My two favorite Kaylee stories are as follows:
1) At the most recent Father-Daughter dance, it was toward the end of the night, kids were leaving, and the dimmed lights during the dance were now on all the way, signaling the time to leave. As fourth graders, this was to be their last Father-Daughter Dance, so the kids (and the dads) were savoring it. Kaylee was seated at a cafeteria table, in a rare moment by herself, but with kids nearby. She was formally dressed, but looking a bit weary. She had the look of a kid that was ready to change into some more comfortable clothes. I looked at her and said: “It’s hard work looking beautiful, isn’t it Kaylee?”. She did not miss a beat, looked me right in the eye and replied: “For me, it just comes naturally.” #WeLoveYouKaylee
2) The end of fourth grade was drawing to a close, and the awards ceremony was here, complete with a bridging ceremony on the stage for all fourth graders to partake, symbolizing bridging from the primary school to the middle school next school year. It was a bit monotonous to watch six classes of fourth graders complete this bridging, one by one, but it gained momentum as a few kids expressed their enthusiasm by posing at the top of the makeshift bridge, posturing with arms folded, or peace signs (deuces), or a mini-victory dance. Then, it was Kaylee’s turn. In a perfect display of her sense of humor and rock-star personality, she purposefully tripped on the way to the bridge. She even had me for a second, and others in the crowd, too, as we exclaimed: “Whoa” and collectively gasped, only to have her reach the top of the bridge and pose. It was a master stroke by the tiniest of girls with a personality as big and bold as it gets. I confess, I had to have my daughter that is Kaylee’s classmate confirm that yes, Kaylee did trip on the way to the bridge on purpose. She didn’t fall, careful not to injure herself, but she sold it as well as she possibly could. #NailedIt #WeLoveYouKaylee
Bonus story: On a recent Saturday morning and afternoon, an Open House was held where families were able to tour the middle school where the fourth graders would attend in the fall. After getting a lay of the land, and marveling at the 1970s orange lockers that dominated the decor in the hallways, I happened upon some classwork that was hanging on the walls. It appears that this particular class had to write a one-page paper describing their hero. Many of them included a picture of who they chose. One of the children illustrated that Kaylee is her hero. It was affixed to the wall with the others, but right at what would be Kaylee’s eye-level.
I think Kaylee is a hero to more people than we think. #WeLoveYouKaylee