Amelia Gifford is not defined by her diagnoses.
She’s a horseback rider, a beach explorer, a giggler and a sticker enthusiast.
She’s also oxygen-dependent 24/7 and lives with a rare combination of medical conditions – interstitial lung disease. Non-cardiac pulmonary edema. Intractable epilepsy. A KCNQ1 genetic mutation – that requires highly specialized care at Rady Children’s Health Orange County (formerly known as CHOC).
Her care team calls her “strong Mia.” Her family calls her a miracle.
And Amelia? She just wants to pick out her unicorn stickers and roll her “O2 buddy” around the house.
A life changed at 10 months
Amelia’s health journey began unexpectedly.
At just 10 months old, she started experiencing recurring lung infections that led to respiratory failure. On her first birthday, she suffered cardiac and respiratory arrest.
That moment marked the beginning of her family’s partnership with the pulmonary team at Rady Children’s.
Dr. Pornchai Tirakitsoontorn, Amelia’s primary pulmonologist, has been a steady and compassionate presence throughout her care. His expertise and dedication have guided the family through countless decisions and milestones. Dr. Sunil P. Kamath has also played a key role during procedures and inpatient stays, offering continuity and support during critical moments.
As her condition progressed and remained medically complex, her care team expanded their approach—connecting with the Childhood Interstitial Lung Disease (chILD) Foundation and deepening their commitment to rare pediatric lung disease research.
Amelia’s case has since helped shape protocols and diagnostic thinking for children with undiagnosed or rare pulmonary conditions.
Empowered by care
Amelia’s daily routine is anything but ordinary.
She starts her day with medications and hydration to manage her diuretics. While most people breathe comfortably without extra oxygen, Amelia’s oxygen needs vary throughout the day, rising during activity and easing when she’s resting.
She’s getting the hang of using her oxygen equipment with ease—long tubes that let her move around the house freely, and lightweight portable machines that go with her wherever she travels.
Her care team has found creative ways to help her feel empowered. One of her favorite routines? Picking out hypoallergenic stickers to secure her nasal cannula.
It’s a small choice that gives her a sense of control and comfort.
Living life without limits
Despite fatigue and persistent symptoms, Amelia doesn’t let her medical needs define her.
She recently visited the beach, built sandcastles, and dipped her toes in the cold water—giggling the entire time.
Her parents raise her with a powerful mantra: “Live life without limits!”
“While we cannot predict her future,” says Brittany, Amelia’s mom, “we focus on creating a meaningful childhood, filled with experiences, adventures and unforgettable moments.”
A hospital that stepped in with heart
After their second extended hospital stay, child life specialists from The Cherese Mari Laulhere Child Life Department stepped in and lightened the family’s load.
One specialist, Taylor Culley, offered creative sibling support strategies and helped Amelia’s brother, Asher, feel included and supported. These moments of care helped the family navigate a time of transition and uncertainty with greater ease.
That experience inspired Brittany to return to school to become a child life specialist herself.
“The hospital’s child life specialists inspired me to pursue child life professionally, a path I now follow with purpose,” Brittany says.
A second chance
Amelia receives all her care exclusively at Rady Children’s, where she’s followed by specialists in pulmonology, cardiology and the epilepsy center.
Her mom credits the health care system’s innovative thinking for saving her daughter’s life.
“Our family owes her second chance at life to Rady Children’s commitment to thinking outside the box,” Brittany says.
“Rady Children’s didn’t fear the unknown; they embraced it. And in doing so, they not only saved our daughter’s life but also changed the future for children facing rare pulmonary diseases.”
The family also shares deep gratitude for Dr. Timothy Hicks, who cares for Amelia’s older brother, Asher, and has been instrumental in managing his asthma. His support has helped the entire family feel seen and cared for.
“All of the pulmonologists at Rady Children’s have been familiar with Amelia’s case,” Brittany adds. “We’re so grateful for their collective expertise and collaboration.”
A daily miracle
Amelia is thriving.
She recently fulfilled her dream of becoming a zookeeper during a visit to the San Diego Zoo with the Make-A-Wish Foundation. She is also excelling in speech therapy and sharing laughter daily with Asher—her biggest cheerleader.
“Amelia is our daily miracle,” Brittany says. “Watching her horseback ride, thrive in speech therapy, or laugh in a princess dress while flexing her ‘strong Mia’ muscles are daily miracles we are always grateful for.”
Her family dreams of a future filled with love, independence and happiness.
“We want her to chase every dream she holds in her heart—riding horses, driving a car, exploring Australia or simply feeling seen, safe and cherished,” Brittany says.
“More than anything, we hope she grows up knowing how deeply she is loved.”
Lighting the way for others
Amelia’s journey continues to inspire.
Her laughter, playfulness, bravery and determination speak volumes. And her story is helping shape a better future for children with complex medical needs.
“She reminds us that every breath is a gift,” Brittany says, “and that within every challenge, there is always hope.”
