Meet Jaxon – 2024 CMN Champion

This year, 7-year-old Jaxon was selected as the 2024 CMN Hospitals Champion for Nicklaus Children’s Hospital in South Florida. Together with his parents, Dara and Cliff, and his little sister, Mila, Jaxon will proudly represent the children treated at their local children’s hospital. As ambassadors, they will devote their time to raising awareness and support for pediatric healthcare needs, embodying the spirit of resilience and hope within their community.

Meet Jax

After a seemingly healthy pregnancy, the world quickly changed for Dara and Cliff the day their son Jaxon was born, May 16, 2016.

At first, Jaxon’s parents were told not to worry by medical providers: “… it is just how he came through the birth canal… for boys born before 38 weeks, their testicles don’t drop until after birth… baby boys are lazy… he’ll figure out how to latch.”

Alarm bells rang when Jaxon’s uncle, Dr. Eliot Budnick, a neuroradiologist, came to meet his nephew in the hospital. Immediately and thankfully, Eliot 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, Jaxon became the youngest patient at Eliot’s practice.  The CAT scan results confirmed Eliot’s suspicion. Jaxon was diagnosed with metopic craniosynostosis, which means the “soft spot” at the top of Jaxon’s head was prematurely fused together in the womb. Without quick intervention, his skull would grow in an unusual triangular shape, preventing normal growth and development of his brain. 

In their search for the best hospital to take their son for quality care and treatment, Jaxon’s parents decided on Nicklaus Children’s Hospital and it’s renowned Brain Institute.  When he was seven months old, Jaxon underwent an eight-hour cranial procedure at Nicklaus Children’s. Despite the challenges, Jaxon was in good hands and his resilience never seized to amaze anyone. 

Before Jaxon’s first birthday, other rare anomalies were confirmed, including testicles that never dropped, misalignment of the eyes, a hole in his heart, a horseshoe shaped kidney, decreased muscle tone, facial deformities, compensated hypothyroidism, and global developmental delays. With so many birth defects affecting multiple systems of Jaxon’s body, his parents believed genetics might shed light on their son’s story.

Multiple rounds of genetics testing at Nicklaus Children’s confirmed Jaxon has a rare gene mutation in CDK13. There wasn’t much known about CDK13 at the time. Today, nearly 300 cases have been identified globally, but a syndrome name has not yet been given. For now, Jaxon’s parents treat each symptom as it arises. 

In two years, Jaxon had four separate urological procedures – all successfully corrected by Jaxon’s third birthday. After multiple ear infections and delayed speech, Jaxon had two sets of ear tubes placed and adenoids removed.  At age four, Jaxon underwent strabismus surgery to help improve a horizontal drift in his eyes.  At age six, Jaxon underwent a fat transfer to improve the sunken appearance around his orbitals, which can be caused by the previous cranial procedure.  At the same time, otoplasty was performed after already having experienced name calling by his peers.

Jaxon had fallen behind in developmental milestones and was soon diagnosed with ADHD and moderate autism. He still struggles with tasks requiring the use of his hands and fine motor skills, making everyday life and academic tasks challenging. But, he has made remarkable progress at Nicklaus Children’s Hospital where he continues to receive physical therapy, occupational therapy and speech therapy.

Through all of the challenges over the last six years, Jaxon’s parents have followed the advice of their amazing geneticist at Nicklaus Children’s who prescribes: “therapy, therapy, therapy AND love, love, love!” 

No one knows what the future will bring, and Jaxon’s next chapters might not be as predictable as his peers; however, Jaxon’s undeniable resilience and carefree, fun personality has, and will continue to, inspire and create positive change for all of the lives he will touch.