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Lillyanna (Lilly) during a sleep study.
Lillyanna (Lilly) during a sleep study.
Lilly (left) and her younger sister Abbilynne Siroky.
Lilly (left) and her younger sister Abbilynne Siroky.

Mother brings awareness to rare condition pulmonary hypertension


Friday, February 21st, 2014
Issue 08, Volume 18.
Bevi Edlund
Special to the Valley News


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 couldnít hear anything," Siroky recalled. "I was scared. I didnít 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 donít 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 donít like to let anything get me upset or scared," she said.

Siroky said the scariest part about the condition is that her daughterís condition can change at any moment.

She explained that for five years the medication that Lilly was taking was working fine until suddenly it wasnít 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 itís difficult for children to understand her condition, such as Rosalyn Martinezís son Logan Garcia, 10, who is a longtime friend of Lillyís and a neighbor of the family. Advertisement
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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, heís still "perplexed" about it.

This condition has affected Lillyís childhood significantly because she canít do the same things that other children get to do. Although she can still play like any healthy child, she isnít able to run like the other children at school.

Siroky recalled a time when her daughter was in the first grade and she wasnít able to take P.E, mostly due to running; because of this the other children called her lazy.

"How come I canít run like the other kids?" Siroky recalled her daughter once asking. "ÖI just want to be normal."

Since Lillyís 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 daughterís condition, it has made Siroky a stronger person because of the strength her daughter has.

Joshua Siroky, Lillyís 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.

"Weíre scared, but we cherish it," Siroky said.

Siroky wants her daughter to know that itís ok to be different and that people arenít 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 isnít 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.


 

4 comments

Comment Profile ImageDidier C
Comment #1 | Saturday, Feb 22, 2014 at 9:32 am
My wife Debbie has been suffering from Pulmonary Arterial Hypertension for several years. She would love to go to Pizza Factory on March 5 but most of all she would love to meet Lillyanna. Is there a particular time of that day when she would be able to do this?

D. C.........., Murrieta
didchat@yahoo.com

EDITORIAL NOTE: We don't like to allow full names in order to protect our commenters.
Comment Profile ImageBrenda
Comment #2 | Wednesday, Feb 26, 2014 at 4:28 pm
I am so sorry to hear of your daughters illness. I will keep her in my prayers and thoughts.
Comment Profile ImageAmanda
Comment #3 | Friday, Feb 28, 2014 at 6:11 pm
My 1-year-old was just diagnosed with PH. This story is inspiring and scary for me. We have a long uncertain journey to go on. Cherish every moment with your children.
Comment Profile ImageKori
Comment #4 | Tuesday, Mar 4, 2014 at 11:17 pm
Amanda there are tons of sources on FB, families of children with Pulmonary Hypertension and you can follow Lilly on FB at Prayer's 4 Lilly & Hope for a Cure . Also I will be starting up a support group in temecula ..We will Be at Pizza Factory at 6 tomorrow.. Would love to meet you

Article Comments are contributed by our readers, and do not necessarily reflect the views of The Valley News staff. The name listed as the author for comments cannot be verified; Comment authors are not guaranteed to be who they claim they are.

 

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