Jeremy was born with Hemoglobin H Constant Spring, a blood disorder that affects his ability to produce healthy red blood cells. Because Jeremy is transfusion dependent, he visits Valley Children’s Healthcare every three to four weeks for blood transfusions. Along with administering these life-saving transfusions, his care team also provides genetic and nutrition counseling to ease additional symptoms. As Jeremy continued his care journey, he soon had a younger brother and sister by his side. Tinsley and Ryser also inherited the same condition, and the trio began navigating their diagnoses together. Since Jeremy’s parents had no prior knowledge they were carriers of the genetic condition, they are especially grateful for the clinical care and overwhelming support their team at Valley Children’s delivers. Today, Jeremy is as vibrant and playful as ever. From playing with action figures to building cities for superheroes, nine-year-old Jeremy’s boundless imagination is always coming to life.

When Bayliss was diagnosed with stage 4 liver cancer, her family was stunned. Her diagnosis, metastatic hepatocellular carcinoma, is exceedingly rare, affecting less than 100 children in the U.S. every year. Thankfully, Bayliss received life-saving care at the Liver Tumor Program at Texas Children’s, one of the largest programs in the nation. When doctors first saw Bayliss, they found that her tumor was too large to be removed, and the cancer had spread to both lungs. She underwent a few rounds of chemotherapy at her local hospital and then returned to Texas Children’s to have her lung tumors removed. Despite the frightening prognosis, the care team at Texas Children’s gave her hope. They used a multidisciplinary approach, bringing together a diverse group of specialists and surgeons to provide the best quality of care. As part of the world’s largest children’s hospital, the Liver Tumor Program has access to the full range of subspecialty expertise – which is key for treating complex cases like Bayliss’. When her tumor wasn’t responding to the initial treatments, her doctors discussed trying a new medication. After one week on the drug, her health started improving across the board! Bayliss felt better than she had in months, and today, she is cancer-free!  She is thrilled to be back in school with her friends and will continue to see her team every few months for check-ups. Her family is grateful to Texas Children’s for saving Bayliss’ life.

During Marky’s delivery, unexpected challenges cut off his oxygen supply and caused permanent brain damage. Because of the damage, Marky has developmental delays that restrict him from communicating verbally and walking. Marky meets with physical, occupational, and speech therapy teams, helping him reach his highest cognitive and movement capabilities. With their committed care, Marky has grown into a social butterfly who loves spending time with his friends and family. And thanks to a unique program at Blank Children’s Hospital, Marky was part of something truly special this summer. Through a partnership between Blank Children’s Hospital and Iowa State Athletics, Marky was the “Kid Captain” at an Iowa State home football game. As Kid Captain, Marky helped with the coin toss and waved to the crowd from the field. Marky’s parents are incredibly grateful for the fun programs and the extensive medical support their children’s hospital provides. 

Soon after Ocean was born, she developed chronic ear infections, sleep apnea, and severe stiffness in her joints. When she visited USA Health Children’s & Women’s Hospital, her care team diagnosed her with Hurler Syndrome, a rare enzyme deficiency. Every Wednesday for the past six years, Ocean and her mom have visited the hospital for enzyme replacement infusions that significantly alleviate her symptoms. However, these visits have become much more than a medical experience for Ocean. From the time she walks through the door to when she leaves, she is met with excitement and support from her care team. Ocean has formed close friendships with other patients and even steps up to guide other children undergoing similar treatments. While there is no known cure for her diagnosis, these enzyme infusions have helped her flourish. Today, she loves singing, dancing, and helping her mom teach exercise classes. Ocean will continue to receive her treatments, which she always looks forward to, thanks to her dedicated, compassionate team.

Because of a congenital condition called hemifacial microsomia that causes one side of the face to be underdeveloped, Luca was born without a left ear and ear canal and had complete hearing loss on the left side. As a toddler, he used a special hearing aid and attended a school for deaf students to develop social and communication skills. While he was doing well, his parents wanted a new solution to help Luca build his confidence. After exploring their options, they met with a pediatric plastic surgeon at Cohen Children’s Medical Center who had performed the world’s first ear reconstruction using cadaver cartilage a few years prior. Using a 3D-printed model of Luca’s right ear, the doctor shaped a similar ear from cartilage and surgically attached it in only an hour. When Luca returned to his kindergarten class, he was beaming with confidence. A few months later, the doctor repositioned Luca’s ear and will continue to add details in the months to come. Today, Luca always has a smile on his face and loves that he can wear sunglasses just like his mom, dad, and little brother.  

Karson was born prematurely at 24 weeks, weighing only one pound. He was rushed to the NICU at Le Bonheur Children’s Hospital, where he faced numerous challenges, including being intubated, battling infections, undergoing blood transfusions, and struggling with retinopathy of prematurity. Thanks to his committed care team, Karson fought hard and went home after four months. A few months after being discharged, he was diagnosed with stage four subglottic stenosis, a narrowing of the airway between the vocal cords and trachea. His condition required a trach tube, which severely limited his movement. That’s where Le Bonheur’s Collaborating to Help Everyone Effectively Recover (CHEER) Program truly saved the day. The initiative provided essential support to mobilize Karson and help him become more independent, promoting early recovery. Team members worked with his family to forge a trusting relationship and ensure they understood every part of Karson’s condition. Now three years old, Karson is doing well in school and is set to have his trach tube removed and reconstruction surgery shortly after!