When Kori Siroky, a Temecula resident, was told by doctors that her daughter Lilly Detillion-Siroky, 7, was diagnosed with a rare heart condition called pulmonary hypertension in 2007, she said it was like the scene out of a movie.
“Everything was so dizzy, everything shutdown, and I couldn’t hear anything,” Siroky recalled. “I was scared. I didn’t know what it was.”
Pulmonary hypertension (PH) is increased pressure in the pulmonary arteries; these arteries are responsible for carrying blood to the heart then to the lungs to pick up oxygen, according to Siroky.
PH causes symptoms such as shortness of breath during routine activities, such as climbing stairs, as well as causing tiredness, chest pain, and a racing heartbeat.
Lilly is only one of several children in Southern California who has this condition, according to her mother.
She was born with three holes in her heart and was diagnosed with PH at 1-year-old. Cardiologists initially told Siroky that most children that have the condition don’t live past the age of 5.
Now at age 7, doctors have called Lilly a “miracle child.” Siroky said the situation that her daughter and her family are in is an everyday nightmare.
Feeling sometimes helpless, Siroky feels like there is nothing she can do to help her daughter.
“I keep my faith, I don’t like to let anything get me upset or scared,” she said.
Siroky said the scariest part about the condition is that her daughter’s condition can change at any moment.
She explained that for five years the medication that Lilly was taking was working fine until suddenly it wasn’t working anymore, so she needed a new treatment. Lilly also needs to be watched at all times because she could turn pale or pass out at any moment.
Siroky explained that the reason why the medication stopped working is because of body growth. As children grow the pressure gets higher, the body is working more, as well as carrying more weight.
“When kids with PH get older, they get worse,” she said.
Lilly appears to be quite healthy on the outside, so it’s difficult for children to understand her condition, such as Rosalyn Martinez’s son Logan Garcia, 10, who is a longtime friend of Lilly’s and a neighbor of the family.
Logan and Lilly like to play together and when they ride their scooters to school together Martinez has to tell him to slow down.
Although she has explained the condition to him, he’s still “perplexed” about it.
This condition has affected Lilly’s childhood significantly because she can’t do the same things that other children get to do. Although she can still play like any healthy child, she isn’t able to run like the other children at school.
Siroky recalled a time when her daughter was in the first grade and she wasn’t able to take P.E, mostly due to running; because of this the other children called her lazy.
“How come I can’t run like the other kids?” Siroky recalled her daughter once asking. “…I just want to be normal.”
Since Lilly’s physical activities are limited some of her other favorite activities include drawing and singing. Her mother describes her personality as funny, sweet, sensitive and selfless.
Because of her daughter’s condition, it has made Siroky a stronger person because of the strength her daughter has.
Joshua Siroky, Lilly’s stepfather, hopes that in the coming years there will be a cure for PH; they also have a younger daughter and are expecting their third child. The family cherishes every moment together.
“We’re scared, but we cherish it,” Siroky said.
Siroky wants her daughter to know that it’s ok to be different and that people aren’t going to make fun of her for it.
Martinez said the family is handling this “complex disease” as best they can.
Siroky said parents need to appreciate their children being able to run and walk, and to “cherish every moment of it.”
Unlike the vast awareness of cancer, there isn’t very much awareness on PH, according to Siroky. Therefore in an effort to bring awareness to it a fundraiser will be held to raise money for the Pulmonary Hypertension Association at Pizza Factory on Wednesday March 5. Twenty percent of the orders will be donated to PHA.
“[The family] is an inspiration just by putting out the word of what it is,” Martinez said, because the condition is so rare. “There is hope.”
Pizza Factory is located at 31725 Temecula Pkwy. in Temecula. For more information, call (951) 303-8500.