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 Children's Hospital Colorado in Aurora, CO.

At age 4, Maelle began to complain that her head hurt and her eyes started crossing. Doctors discovered a three-centimeter mass in her brain and immediately sent the family to Children’s Hospital Colorado where Maelle had a biopsy.

Doctors at Children’s Hospital Colorado diagnosed Maelle with a non-cancerous pilocytic astrocytoma. Due to the tumors’ precarious location, it was deemed inoperable. After careful consideration, Maelle’s family and care team decided to shrink the tumor with chemotherapy. After seven months of chemotherapy, the tumor had shrunk significantly, and they were able to cease treatment and return to normal life.

For two years, Maelle enjoyed life outside of the hospital and became an avid volleyball player. But unfortunately, during a routine check-up, doctors discovered that Maelle’s tumor had started growing again. In January of 2021, Maelle began a new experimental treatment to help reduce the growth of the tumor. Maelle continued to remain in the best of spirits and came off the treatment in February of 2023.

Whilst the treatment saw limited success, she has been off all medication since. Maelle continues to visit Children’s Hospital Colorado to monitor the tumors’ progress and is excited to start high school next year! The family has hope in the groundbreaking research being conducted at Children’s Hospital Colorado to find new treatments and therapies for kids like Maelle.

“Words can’t describe what Children’s Colorado means to us,” says her mom, Kristen. “A hospital isn’t a place where most people would choose to be. And yet, I always feel at ease here, knowing that our daughter is getting the best care available. They are nothing short of amazing.”

Thanks to donations to Children’s Miracle Network Hospitals, Maelle benefits from groundbreaking research being conducted by her local member hospital.

Treated at Nicklaus Children's Hospital in Miami, FL.

After a seemingly healthy pregnancy, Jaxon’s parents were told not to worry by medical providers by a few early signals that something seemed off. Thankfully, his uncle noticed the ridge along Jaxon’s forehead and did not believe the triangular shape of Jaxon’s head was caused by the trauma of delivery. At two weeks old, a CAT scan confirmed Jaxon’s metopic craniosynostosis, where the soft spot at the top of his head had been prematurely fused together in the womb. Jaxon’s parents took him to the renowned Nicklaus Children’s Hospital Brain Institute. At seven months old, Jaxon underwent an eight-hour cranial procedure at Nicklaus Children’s. Despite the challenges, he was in good hands, even combatting other anomalies such as the misalignment of the eyes, a hole in his heart, a horseshoe-shaped kidney, and more. Given the range of birth defects their son faced, Jaxon’s parents’ genetics testing at Nicklaus Children’s confirmed that he had a rare gene mutation in CDK13. There wasn’t much known about CDK13 at the time. Today, nearly 300 cases have been identified globally. For now, Jaxon’s parents treat each symptom as it arises. He struggles with tasks requiring the use of his hands and motor skills, and his ADHD and moderate autism made everyday life and academic tasks challenging. And yet, he continues to make remarkable progress in physical therapy, occupational therapy, and speech therapy. Jaxon’s resilience and carefree, fun personality positively inspires all the lives he touches.

Donations to Children’s Miracle Network Hospitals support the clinical institutes and personalized care that allow Jaxon to make remarkable progress on his journey.