Meet Liljana
Name: Liljana
Diagnosis: ACTH Deficiency / Adrenal Insufficiency, Primary Ciliary Dyskinesia, Asthma
Age: 11
Things I love: Arts and crafts, traveling, dogs, playing the cello, Minecraft and being with my twin brother
If I could have any superpower, it would be: Teleporting
I am proud to be a Children's Champion because: They helped me along the way and saved my life twice in 2022. I like to show that just because someone looks fine, that doesn’t mean they are or that it isn’t a lot of work to just stay going.

Bio:

Before Liljana turned 2 years old, her health was a rollercoaster of allergies, asthma and colds that quickly escalated to pneumonia or bronchitis. After repeated illnesses, Liljana and her family embarked on a long journey to understand a rare genetic condition known as primary ciliary dyskinesia (PCD) and the role it may play in her health. PCD prevents your body from clearing out germs. A formal PCD diagnosis can be a complicated process, but St. Louis Children's Hospital is one of the only institutions paving the way with research.

Liljana faced chronic lung, ear and sinus infections for many years. At some point, like most children, she contracted a stomach bug and became extremely sick. She became so sick that she had to be transported to St. Louis Children's via the Mobile Intensive Care Unit from her community hospital. When the same thing happened a few months later and suddenly there was a whole new set of symptoms, her family became even more concerned and perplexed.

Despite her family's efforts, both Liljana and her twin brother, Roman, got COVID-19 in 2022 at the age of 9. The same day that she tested positive, Liljana's fever skyrocketed to a life-threatening 106 degrees, and she became very lethargic. Her mom, Michelle, took her immediately to the St. Louis Children's Emergency Department (ED). She managed to walk into the ED on her own, but within a few hours became unresponsive and had to be put on a ventilator. She was in the Pediatric Intensive Care Unit (PICU) for almost a week.

A few weeks later, the unimaginable happened — her symptoms returned and Liljana was once again hospitalized. The St. Louis Children's team was determined to find answers. After 20 days in the PICU, Liljana was diagnosed with another rare condition known as adrenal insufficiency (AI). There is no cure, but it is manageable with medication. Her twin, Roman, who was also cared for emotionally by the Child Life team during the trauma of Liljana's illness, is thankful to have his sister healthy.
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Because of You:

Kids like Liljana, and her twin brother, Roman, have access to donor-funded programs like Child Life Services and Transport Services. These programs are critical not only for the children facing a life-threatening illness or injury but also for the support and care they offer to families experiencing trauma and coping with fears that come along with many diagnoses.

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