Meet the 2021 Champions from Lurie Children’s
Every year, Lurie Children’s is proud to highlight stories of hope and resilience through the Children’s Miracle Network Hospitals Champions program. This year is no exception, as the stories of Joanna, Faith, siblings Anthony and Talia, Amadeo, Gracie and Wesley inspire us to continue supporting the mission of Lurie Children’s.
Each family’s journey is a testament to the incredible work happening every day within the walls of Lurie Children’s. These six families are just a few of the 220,000 families who receive life changing care at our hospital and outpatient clinics each year. Learn more about our 2021 patient champion families below.
Meet Joanna from Chicago, IL
Joanna was born with hypoplastic left heart syndrome, Joanna, underwent three open heart surgeries before she went in to heart failure. On February 23, 2018, she received her new heart thanks to an organ donor. Joanna’s parents were told she had a match for her new heart within just hours of being on the transplant list. She loves to sing, dance and wants to be a chef when she grows up! Joanna, who is one of three siblings attends kindergarten and has a smile that lights up any room she’s in!
Meet Faith from Chicago, IL
In 2009, Faith was found as a three-month-old baby in an abandoned hospital with severe medical problems. Two years later, she was adopted from an orphanage in China and brought home to the Chicago area in 2011, beginning a series of appointments to diagnose and treat Faith. Eventually, she was diagnosed with primary ciliary dyskinesia (PCD), a rare genetic condition that causes a build-up of mucus. PCD can cause chronic infections of the ears, sinuses and lungs.
Faith began treatments similar to the treatment that patients with cystic fibrosis receive. Twice a day, she wears a vest that causes mucus to move through her lungs. Vest treatments, in combination with a two-week inpatient stay that required a tune-up of Faith’s lungs, kept her hospital-free for five and a half years.
Now, Faith is an active 12-year-old who loves staying active and playing sports. Faith’s care is overseen by an entire team of multidisciplinary specialists including a physician, nurse, genetic counselor and respiratory therapist are committed to providing the most up-to-date diagnostic and treatment plans for children like Faith with PCD.
Meet Anthony and Talia from Griffith, IN
8-year-old Anthony and 7-year-old Talia share more than just being siblings- they also have both overcome cancer diagnoses, which they received treatment for at Lurie Children’s just years apart. Through Anthony and Talia’s medical journeys, they endured intensive surgeries to remove tumors, chemotherapy, and eventually both lost a kidney. Today, both children have completed treatment and are in remission, but continue to be seen by specialists at Lurie Children’s for continued care.
Meet Amadeo from Berwyn, IL
What started as pain in his knee, Amadeo and his family were told he had a form of cancer called osteosarcoma. He immediately began the first of 10 rounds of chemotherapy, but eventually a leg amputation would have to take place for best chance of survival. During his stays on the Oncology unit, Amadeo relied on Child Life specialists to navigate the challenges of life after his amputation. One of his Child Life specialists, Elizabeth, says Amadeo brings so much joy to all who worked with him, and inspired many other patients while cruising through the hospital on his crutches before getting his prosthetic leg.
Amadeo continues to undergo scans every three months and remains cancer free. He’s focused on getting back to riding a bike and participating in different adaptive sports clinics. Amadeo also loves video games and enjoys activities like trivia and BINGO while inpatient at Lurie Children’s.
Meet Gracie from Skokie, IL
Since receiving care for multiple conditions at Lurie Children’s, Gracie and her family consider the hospital to be their home away from home. At a very young age, Gracie had to overcome hearing loss due to a rare condition that affected her brainstem pathway. Eventually, she re-learned how to hear and speak thanks to aural rehabilitation therapy. Later, Gracie also battled severe neutropenia, a condition that weakens the body’s ability to fight infection, and spent 18 months in and out of the hospital.
For the past two and a half years, Gracie sees a care team of specialists at Lurie Children’s for treatment for juvenile idiopathic arthritis (JIA), which she has in her knees, jaw, eyes and ankles. She hasn’t let this stop her from practicing gymnastics, swimming, and dreaming of being a veterinarian when she grows up.
Gracie and her family are so grateful for Children’s Miracle Network Hospitals partners. Sylwia, Gracie’s mother, says: “You are giving these children the brightest future. Our little girl can hear, she can move, and she can talk – it means everything to me and we can’t say thank you enough.”
Meet Wesley from Schaumburg, IL
At just four days old, Wesley underwent open heart surgery at Lurie Children’s to repair his aorta, which was so narrow it could barely pump oxygenated blood away from his heart. Thanks to a care team of specialists, Wesley recovered from the surgery. His mom, Elise, is grateful for the clinical expertise that saved her son’s life, as well as the wrap-around services of a comprehensive team that included excellent nurses, skilled respiratory therapists and child life specialists to support Wesley’s two older siblings during his hospitalization. Wesley turned two in November 2020. He continues to make annual visits to see cardiologists at Lurie Children’s.