Jackson Buyea was born 16 weeks early in a small hospital outside of Indianapolis while his parents were on a road trip to pick up their two older sons visiting relatives in Kansas.
The baby, weighing 1 pound, 12 ounces, was kept alive by a respiratory therapist.
“She stood for an hour or an hour and a half with two fingers on Jackson’s chest and a little pump just keeping him breathing,” said Jackson’s father, Robert.
Jackson was soon transferred to Peyton Manning Children’s Hospital at St. Vincent in Indianapolis, where he and his mother, Jen, stayed for two months before being flown home to Buffalo and Women & Children’s Hospital.
His parents credit the medical staff at those hospitals for saving Jackson's life and treating the many complications that followed, including a chronic lung disease called bronchopulmonary dysplasia; a spontaneous bowel perforation; hydrocephalus, which is an accumulation of fluid on the brain; and cerebral palsy.
“He had a very, very rocky start,” said Jackson’s physical therapist, Dr. Dawn Shaflucas of Women & Children’s Hospital.
Four years and 13 surgeries later, Jackson is a happy, confident and inquisitive preschooler attending the Catalician Center in Depew. He walks with crutches, but he hopes to one day walk independently.
“He is a lot of work but not ever a burden,” said Jen Buyea. “He’s such a joy. He understands life and love at the truest level. If you look at him and talk to him, you know that. He’s more than those red crutches.”
Jackson's story is being told because today is Kids Day. Thousands of volunteers will help sell a special Kids Day edition of The Buffalo News this morning. The proceeds from the sale of this special edition will benefit Women and Children’s Hospital of Buffalo, Cradle Beach and children in Western New York.
Jackson loves fire trucks and riding the school bus. He received a tee-ball set for his fourth birthday on April 6, and he hopes to play on a team. At home in Lancaster, he enjoys flipping through books with his older brothers Clark, 15, and Cody, 11.
“I can do what I can do!” is his motto.
He also keeps a very busy schedule of appointments for an array of therapies, including physical, occupational, speech, special instruction and vision. Aquatic therapy starts soon, and this month he resumed weekly hippotherapy at a farm in Youngstown, where he rides atop a horse named Fred for 30 minutes. Fred’s equine movements help Jackson develop core strength and teach him how to shift his weight.
“This is the busiest preschooler, and he just handles it amazingly,” said Shaflucas. “He goes from one thing to the next and works as hard as he can every time with a smile on his face.”
Jackson has become such a regular at Women & Children’s Hospital that he’s earned the nickname "the Mayor” for all the socializing he does.
“He actually stops and looks people right in the eye, says, ‘Hi,’ and doesn’t really let them move on without getting a response,” said Jen Buyea.
His parents were pleased with Jackson’s progress, but they worried that it had plateaued and that he would never reach that ultimate goal of walking independently.
“As long as he’s going to tell me ‘I want to play baseball’ or ‘I want to run’ then I’m going to do whatever I can to get him there,” said Jen Buyea, a nurse at Roswell Park Cancer Institute.
In August, Jackson underwent a selective dorsal rhizotomy performed by his neurosurgeon, Dr. Veetai Li. The procedure involved cutting some of the sensory nerve fibers that come from the muscles and enter the spinal cord to reduce the spasticity in his legs.
It’s usually performed on older kids with cerebral palsy, but Jackson’s parents felt he was ready.
“It’s my job as his advocate and his mom to do whatever we can do to make that happen,” said Jen Buyea. “I had a lot of people tell us ‘No’ when I knew he could tolerate it.”
Shafluca agreed the surgery was a success.
“It made his legs significantly more flexible,” said Shafluca. “He has been working hard since then at gaining a lot more strength and control over his leg movements.”
The family is proud of Jackson for overcoming the odds stacked against him four years ago.
“I love the way that he is who he is,” said Robert Buyea. “All of these huge groups of people have taken him in as their little guy.”