Meet Liliana: 2021 Family Advocacy Week Champion
Liliana is participating in Speak Now for Kids Family Advocacy Week from June 13-18, 2021. Through this event, Liliana and her family will discuss her health journey, Johns Hopkins All Children's Hospital’s role in providing Liliana with necessary health care services, and why the public and our elected officials must invest in the future of patients like Liliana.
As a newborn, Liliana failed hearing screenings and her echocardiograms were abnormal. Additionally, there were feeding issues, an ear deformity and crooked smile that concerned the doctors.
An array of lab work and genetic testing concluded Liliana had CHARGE syndrome, which encompasses a variety of disorders including coloboma, heart defects, atresia of the choanae, restriction of growth and development, genitourinary abnormalities, ear anomalies and hearing loss. Liliana would need ongoing care throughout her life.
“The immediate impact for me was the amount of focus needed,” says Katrina, Liliana’s mother. “The most important thing in the entire world was getting Lili the best care she needed and continued research.”
Liliana has gone under anesthesia 19 times, had countless tests done and participated in a multitude of studies. She sees 17 specialists, including the recent addition of a hematologist. A recent sleep study revealed that Liliana has severe obstructive sleep apnea which may lead to a tracheostomy in the future.
“The pandemic has kept us home a lot more,” says Katrina. “Lili has not been in public spaces for over a year.”
During the COVID-19 pandemic, most therapies moved to tele-therapy. As her sole caregiver Katrina is now her therapist too, performing all tasks and exercises. This includes her physical, occupational, speech, vision and deaf mentor therapy sessions as well as her homeschooling.
“Johns Hopkins All Children's Hospital has always been there for us,” says Katrina. “I know they will meet Liliana’s future needs as well.”
Liliana is now 5 years old and enjoys bubbles and playing in water.