33^rd Annual Miracle Tournament and Celebration Dinner

Treated at Boston Children’s Hospital in Boston, MA.

The joy of Kennedy’s birth changed to fear when she stopped feeding and her oxygen levels dropped. After six weeks with no answers at a local hospital, Kennedy’s parents drove 90 minutes to Boston Children’s Hospital, where extensive testing revealed Kennedy had a rare condition where her weak trachea could collapse to block the airway, making it hard to breathe. Her doctor explained that Kennedy needed a tracheotomy to keep her airway stable. After 136 days at Boston Children’s, nine-month-old Kennedy was able to go home. The care team helped the family understand how to access benefits for children with complex medical needs, including the care of an at-home nurse. Six years later, Kennedy visits Boston Children’s for check-ups and is making great progress, working toward being able to walk on her own. Kennedy is a proud big sister and loves music and seeing her friends at school.

Donations to Children’s Miracle Network Hospitals supported Kennedy over her 136 days of care with Child Life Specialists, music therapy, and visits from therapy dogs.

Treated at Baylor Scott & White McLane Children's Medical Center in Waco, TX.

Identical twins Audrey and Ella were born nine weeks premature, and each weighed two pounds. They spent several weeks in the neonatal intensive care unit at Baylor Scott & White McLane Children’s Hospital. Despite their early arrival, the twins were healthy, and their early interventions were very minimal. However, when they were one year old, a routine doctor’s visit led to a referral to a plastic surgeon at McLane’s Children’s Hospital who found both of their skulls were developing in a triangular shape. This condition, Metopic Craniosynostosis, happens when the bone plates that make up the skull fuse too early and can lead to vision, learning and behavioral issues. Audrey and Ella required a Cranial Vault reconstruction/reconstructive surgery at 17 months old. After their ten-hour procedure, the doctors confirmed that they did not need any additional surgery. Today, the twins are six-years old and are growing and thriving. With their scars hidden beneath their hairline, you would never know of their condition.

Donations to Children’s Miracle Network Hospitals helped to purchase the equipment used for Audrey and Ella’s Craniosynostosis Cranial Vault reconstruction/reconstructive surgery.

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.