Unlike most 4-year-olds, Lanie Lazechko doesn’t move around much. A rare cellular disease she developed in utero left her with low muscle tone, among other disabilities.
But when she’s in water, Lanie comes alive.
“She loves the water,” her mom Laura said. “She wiggles and moves and does stuff we’ve never seen her do before out of the water.”
Thanks to Make-a-Wish Colorado and the Colorado Springs Fire Department, Lanie will no longer have to wait for trips to the YMCA to find her groove. On Saturday, the Lazechkos finished installing a 600-gallon hot tub paid for by Make-a-Wish and filled by firefighters.
“This whole process has been a gift,” Laura said. “A lot of her doctors appointments and therapies are difficult. They’re hard and sad, but everything Make-a-Wish has done has been the opposite: so encouraging and uplifting.”
Laura and her husband Tad started to notice developmental abnormalities in Lanie when she was about 6 months old. She did not reach the normal milestones for an infant at the rate that her two older siblings did and in some cases, has yet to do so.
Laura and Tad took her to a geneticist who could not sort out the puzzle pieces of Lanie’s condition. Eventually, though, she was diagnosed with 8p inversion duplication and deletion, a cellular disease with only 50 known cases in the world.
“She’ll probably never walk or talk, and will need lifelong care,” Laura said. “There’s nothing to fix it, either, because (the chromosomal abnormality) duplicated in every cell of her body.”
At first, the Lazechkos were devastated. But their grief could not match the vibrancy of their child.
“It feels like a long journey at first,” Laura said. “You have to grieve all that and acknowledge it. … There’s so much beauty and joy in kids like this that you don’t typically have the eyes to see.”
She continued, “It makes you slow down, and with every development you don’t think twice about with other kids, you think, ‘Oh my goodness! You lifted your head up!’ ”
Even in the couple of hours the firefighters spent with Lanie filling the hot tub Saturday, they were amazed by her energy.
“People like Lanie help you stop and appreciate life and smell the flowers,” Fire Department spokesman Capt. Brian Vaughan said. “She can teach us a lot. Even our little exposure today teaches us a lot.”
Lanie was not able to swim in the pool Saturday because the water needed to heat up. Her parents are throwing her a party in a couple of weeks to celebrate the gift.