Meet Jaxson: 2021 Family Advocacy Week Champion

Jaxson is participating in Speak Now for Kids Family Advocacy Week from June 13-18, 2021. Through this event, Jaxson and his family will discuss his health journey, Nicklaus Children’s Hospital’s role in providing him with necessary health care services, and why the public and our elected officials must invest in the future of patients like Jaxson.

When Jaxson was born, his mother’s job had brought the family to Jamaica. However, due to health complications and a lack of treatment, they brought him to Nicklaus Children’s Hospital in Miami for a second opinion. He was admitted to the emergency department and within a few days, they learned his condition was complex.

Jaxson was diagnosed with CHARGE syndrome and chronic lung disease. He is also deaf and blind. 

“I had to quit my job because I realized our family would never return to Jamaica to live,” says Donia, Jaxson’s mother. “Jaxson’s sibling was three at the time, and he stayed with his Dad in Jamaica while Jaxson was in the ICU, so our family was separated for about six months.”

Once diagnosed, Jaxson went through a variety of appointments and procedures to understand his diagnosis and improve his quality of life. He had a g-tube and tracheostomy placed to decrease aspiration and severe obstructive apnea, VitalStim treatment to help him learn to swallow, his salivary glands removed due to frequent infections and his tonsils and adenoids removed.

Since the onset of the COVID-19 pandemic, Jaxson’s quality of life has improved. Limited exposure to others, increased efforts to clean and disinfect, and more time at home means Jaxson has avoided the typical childhood sicknesses that may result in ICU stays for him. 

“We still go to the hospital for appointments and have had a few planned procedures throughout the pandemic,” says Donia. “His continued health is a testament to how well the hospital handled COVID-19 protocols.”

Now 4 years old, Jaxson had his tracheostomy removed and is eating food by mouth. He’s walking and running and loves playing with his sensory box on the light table. 

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