33^rd Annual Miracle Tournament and Celebration Dinner

Treated at West Virginia University Children’s in Morgantown, WV.

Addison was eight years old when she had a rapid onset of seizures, which were misdiagnosed as panic attacks. Doctors encouraged her family to take their already scheduled vacation, but after arriving in South Carolina, her episodes increased in intensity and frequency. When her mom took her to the nearest emergency department, she was told it would be a thirteen-hour wait. Addison’s eyes were dilated and her hands and legs were shaking; her mother wondered if her daughter was having seizures and pleaded for a doctor to admit her daughter. After countless tests and doctors’ visits, neurologists diagnosed her with cortical dysplasia to the frontal lobe, which is a congenital abnormality of brain development that can cause irretractable epilepsy. Addison underwent a craniotomy with right frontal lobe resection and a few weeks later, she needed a spinal tap to drain the excess fluid from her brain due to a cerebrospinal fluid leak. Today, although on medication and still having seizures, Addison exudes strength and wisdom far beyond her years. When she grows up, Addison wants to become a Child Life specialist.

Donations to Children’s Miracle Network Hospitals provides life-saving care and essential programs that support Addison and her family during her treatments.

Treated at OHSU Doernbecher Children's Hospital in Portland, OR.

Ages 12 & 10

Madison (Maddie) has only known life with cystic fibrosis. A few days after she was born, she was transferred to OHSU Doernbecher Children’s Hospital for a bowel obstruction. After undergoing the procedure, she stayed in the neonatal intensive care unit (NICU) for 30 days. Two years later, Maddie’s little brother, Max, was also diagnosed with a bowel obstruction. His parents knew to go to the NICU at Doernbecher where his sister received care. Max’s severe bowel obstruction and jejunoileal atresia led to his diagnosis of cystic fibrosis too. As Maddie grew up, her condition began affecting her liver, and when she was 10, she was diagnosed with CF-associated liver disease. While their parents wouldn’t wish the diagnosis on either of their children, they see how Maddie and Max support each other on their shared health journeys. Maddie, now 12, loves art, playing golf and wants to be a veterinarian. 10-year-old Max is an all-star baseball player and his favorite position is shortstop. Maddie and Max continue to lean on one another as they manage their condition and are each other’s biggest cheerleaders.

Thanks to the support of Children’s Miracle Network Hospitals, Maddie and Max received quality care during their stay in the NICU at OHSU Doernbecher Children’s Hospital.

Treated at Texas Children's Hospital in Houston, TX.

Kylea was born prematurely at 34 weeks in Kansas, and she tested positive for cystic fibrosis (CF). Her medical team thought it was a false positive since she had no symptoms. Months later, Kylea was still under five pounds. Her mom took her to the emergency center at a nearby children’s hospital in Missouri, where Kylea was admitted for jaundice. After a liver biopsy and other tests, including blood tests to look for the genetic mutations that cause CF, the family got confirmation: Kylea had two copies of delta F508, the most common genetic mutation that causes cystic fibrosis. Once she had an official diagnosis, Kylea’s family turned to Texas Children’s Hospital since they were ranked number one in pulmonology and offered a holistic approach to care. Her family moved to Houston, just in time for the new school year. Her childhood was filled to the brim with sports, dance, gymnastics, Girl Scouts, swimming, science camp, and trips to the zoo.

Today, she is 15 and studying French. She hopes to travel the world and study forensic psychology in college.

Thanks to donations to Children’s Miracle Network Hospitals, Kylea had access to world-class, holistic pulmonology care for cystic fibrosis.