For Kyle and Lauren Livengood, there’s no greater gift this holiday season than their 17-month old daughter, Natalie.
From the moment Natalie was born on July 18, 2014 – weighing just 3 pounds, 5 ounces – she’s faced and overcome obstacle after obstacle.
She spent her first 10 weeks in Akron Children’s Neonatal Intensive Care Unit (NICU). When she finally went home, she had a breathing tube to provide extra oxygen and a G-tube for feeding. She weighed barely 5 pounds.
Everything seemed to be going well until the week before Christmas, when she developed a respiratory infection. Natalie was admitted to Akron Children’s Hospital’s Pediatric Intensive Care Unit (PICU) on Dec. 25, 2014 – her first Christmas.
Her family vowed to hold their holiday celebration until she came home. They expected a weeklong stay, maybe two. No one could have imagined that they would have to wait 257 days to celebrate the holidays together at home.
It was during this time that Michael Forbes, MD, FAAP, director of clinical research & outcomes analysis at the PICU, diagnosed Natalie with Shwachman-Diamond syndrome, a rare genetic condition that affects the bone marrow, pancreas and skeletal system.
Natalie faced several hurdles – experiencing complications that required her to have a tracheotomy tube and ventilator, as well as surgery to expand her rib cage with titanium rods to improve her breathing. Through it all, Kyle and Lauren kept their tree up and longed for the day they could celebrate the holidays together with Natalie.
On Sept. 9, 2015, their wish finally came true. Natalie came home to the Livengoods’ tree still standing in their living room with unopened presents beneath. Together under one roof, they enjoyed holiday cartoons, family pictures and a visit from Santa. While Natalie continues to struggle with her health, Kyle and Lauren know that every day they have with their daughter is a gift.
“Natalie has shown us that people who are different aren’t scary or unapproachable. They’re a gift in their own way,” says Lauren. “We honestly look at the world differently – all because of Natalie. She’s a beautiful baby with a beautiful spirit, and we’re so proud to be her parents.”