Taylor grew strong enough to get through open-heart surgery with flying colors and her pint-sized personality grew with her. Family members say she was born a comedian, always trying to find ways to make them laugh. Cupboards were her favorite place to hide.
She was small, but Taylor looked strong and healthy. Her mom says she rarely got sick, but at about 2 years old, she appeared to get a respiratory infection she just couldn't shake. At least that's what her pediatricians thought.
After several trips to the emergency room, a doctor heard something wrong with her heart. The doctor took a chest X-ray and saw it was twice the size of what it should have been. The diagnosis was pulmonary hypertension, a fatal disease for Taylor.
"Pulmonary hypertension essentially is a condition in which the pressure in the lungs is elevated above normal," UCLA pediatric cardiologist Dr. Juan Alejos said.
It can start out looking like a cold. It's often diagnosed as asthma.
Alejos said build up and constriction in the arteries of the lungs make the heart work harder to pump blood. Arterial pressure can go sky high. The heart becomes diseased and enlarged. Most patients die from heart failure. If gone undiagnosed, the stricken can die within three years.
Medications often used in adults didn't work for her. Her parents even tried a treatment where IV solutions were infused straight into her chest.
Taylor died shortly after, but her memory and her fighting spirit live on through Taylor's Wish foundation.
On June 2, the third annual RACE 2 CURE PH – Taylor Caffrey Memorial 5K Run/Walk will take place at Sycamore Park in Anaheim Hills. The race starts at 8 a.m.
The research conducted means a lot to 10-year-old Lucas Van Wormer. Six years after his diagnosis, he's alive and doing well thanks to new research and medication.
He and his dad created a series of public service announcements to raise awareness because early detection allowed Lucas to take advantage of new combination therapies being developed.
Lucas is on a combination of medications that includes sildenafil, also known as Viagra.
"Basically these medications help that blood vessel relax, so that the muscle can basically shrink back down," Alejos said.
These types of therapies only work if pulmonary hypertension is detected early. Lucas found out because his pediatrician did a chest X-ray to rule out pneumonia. That fluke saved his life.
Lucas is speaking out to save more lives. It's not easy for him to exert himself, but he plans to be part of the walk to raise awareness because he knows that's part of Taylor's wish.