🌹 Meet Kamiyah Jones
A Beacon for Other Families, Kamiyah’s journey reassures parents that they’re not alone!
A rare genetic disorder tried to define her story. Instead, Kamiyah and her family are defining hope.
Kamiyah is a bright and resilient 4 year old whose life has already inspired a movement of hope. Born on March 6, 2021, into a large and loving family — her parents, two sisters, and three brothers — Kamiyah’s journey began with an early challenge: two weeks in the NICU for swallowing issues. Life seemed to settle into a normal rhythm until, at three months old, a sudden health crisis changed everything.
After an emergency visit to Kingwood Hospital and a transfer to Texas Children’s The Woodlands, an EEG confirmed Kamiyah was having seizures. She was then moved to Texas Children’s main campus, where doctors diagnosed infantile spasms and a floppy airway, providing an NG tube for feeding and medications. A misdiagnosis of Zellweger Syndrome at four months led to the temporary loss of her voice.
Thriving Against All Odds…
From September 2021 through January 2022, Kamiyah endured 144 days in the ICU battling Rhinovirus. During this time she faced intubations, failed extubations, hair loss, and moments when doctors feared the worst. She ultimately received additional diagnoses—developmental delay, dysautonomia, chronic respiratory failure, congenital disorders of glycosylation (CDG), Jamuar Syndrome (UGDH), and epilepsy. On December 28, 2021, a tracheostomy freed her from mouth tubes and offered new stability.
After four and a half months in the hospital, Kamiyah celebrated her first birthday at home. In the following six months, she continued to make hospital visits once or twice a month but each visit was another testament to her perseverance. Today, Kamiyah is thriving against all odds, lighting up every room with her smile and determination.
More than a Medical Journey!
Inspired by her courage, Kamiyah’s parents founded GeneticsRose, a nonprofit dedicated to raising awareness for rare genetic disorders and supporting families navigating similar journeys.
Kamiyah’s story is more than a medical journey, it’s a living reminder that even in life’s hardest seasons, strength, love, and purpose can bloom.