In 2020, Khloe Gloria, a four-year-old from San Angelo, Texas, stopped walking. Her parents took her to neurologists in Dallas after suspecting a genetic condition. Natalie Salazar, Khloe's mother, had a feeling it was Huntington’s disease due to family history. Despite initial suggestions of other conditions like ataxia, an MRI confirmed the diagnosis.
Huntington’s disease is a rare neurological disorder affecting 4 to 10 out of every 100,000 people. The juvenile-onset form is even rarer and accounts for up to 9% of cases. In the U.S., about 41,000 people live with the disease and around 200,000 are at risk.
The disease is caused by mutations in the huntingtin gene that lead to excessive repeats of certain genetic sequences known as CAG. If these repeats exceed specific thresholds—40 for adult onset and over 55 for juvenile onset—the person will develop symptoms earlier in life.
Khloe's younger sister Ariahella “Ari” Gloria also inherited this condition with hundreds of CAG repeats. This form of childhood Huntington’s disease affects fewer than 200 children nationwide according to National Institutes of Health research.
Natalie Salazar sought support through Help 4 HD and connected with Erin Furr Stimming, MD at UTHealth Houston's Center of Excellence for Huntington’s Disease Society of America (HDSA). Dr. Furr Stimming collaborated with neurogenetic disorders specialist Sam Nicholas Russo, MD to provide care for Khloe.
The HDSA Center offers comprehensive care through its multidisciplinary team including neurologists and social workers among others. "It is truly a privilege to care for our patients and families affected by Huntington’s disease," said Dr. Furr Stimming.
Despite no cure being available yet, treatment focuses on managing symptoms such as epilepsy or cognitive decline often seen in children like Khloe who sadly passed away in April 2023 due to complications from the disease at age seven.
Following Khloe's passing Ari began showing more pronounced symptoms leading up to her diagnosis with Juvenile-onset Huntington’s Disease in January 2024 under supervision by Nivedita Thakur MD who oversees Ari's ongoing treatment plan alongside other specialists across various disciplines within UTHealth Houston network ensuring comprehensive coverage tailored specifically towards addressing needs arising from unique challenges posed by living daily life impacted heavily through effects brought forth via progressive nature inherent within pathology underlying root cause driving manifestation outwardly observable symptomatic expressions indicative presence thereof underlying condition itself inherently debilitating further compounded additionally necessitating vigilant monitoring continued intervention proactive engagement aimed preserving quality wherever possible amidst adversity faced collectively shared experience endured throughout journey embarked upon together united front 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