West Texas family battles Huntington’s disease with two daughters

Family drove to Houston for Huntington's care

Huntington's disease is a genetic disorder that usually appears in adulthood, causing the progressive breakdown of nerve cells in the brain. However, a West Texas family traveled all the way to Houston for specialized care at UT Health-Houston for their juvenile daughters.

HOUSTON - Huntington's disease is a genetic disorder that usually appears in adulthood, causing the progressive breakdown of nerve cells in the brain.

However, Khloe and Ari Salazar were diagnosed with Juvenile Huntington's Disease, a rare and severe form of the disease. The family travels to Houston for specialized treatment.

Huntington's disease in the Salazar family

The backstory:

Natalie Salazar first encountered Huntington's disease in her family at a young age, when her aunt suffered from it. Then, when she met her husband, she found out even more about Huntington’s, because his mom suffered from it.

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Parents have a 50% chance of passing it down to their children, but they didn’t realize those statistics at the time. Their first-born daughter, Khloe began showing symptoms before she was four years old and passed away at seven in April 2023. Their second-born daughter, Ari, started suffering symptoms when she was two years old, and she continues to receive treatment at five years old.

By the numbers:

The indicator numbers for their disease: Khloe's was 115, while Ari's is 149, indicating a more severe form of the disease.

What they're saying:

"Seeing my aunt with it was traumatizing as a kid. Then, when my daughter was having trouble with slurred speech and kept falling, I had to tell her pediatrician that I think it's Huntington's disease. An MRI and bloodwork ended up proving that's what it was. My girls keep me going, because I have to show up for them," says Natalie Salazar.

Dr. Nivedita Thakur is a pediatric neurologist and a Pediatric Movement Disorder Specialist at UTHealth's specialty center for Huntington's.  She explains the center. "That means we have a team of doctors who work together to care for Ari. Part of that includes certain specialists, virologists, and a GI specialist, who's helping to care for her nutrition, and a physical therapist, who helps assess her and gives her family advice in terms of what we can do with her when she is home," explains Dr. Thakur.

Salazar family search for support

The Salazar family travels from San Angelo to Houston to access UT Health's specialized Huntington's disease center, highlighting the importance of regional healthcare resources.

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Juvenile Huntington's disease is a devastating condition that affects families deeply. Increased awareness and research can lead to better treatments and support for those affected.

Huntington's Disease poses global challenges, with many countries lacking resources for diagnosis and treatment, especially in children. In the U.S., specialized centers like UTHealth provides crucial support.

What's next:

Ari continues to receive treatment and therapy to manage her symptoms. The family remains hopeful for advancements in research and treatment options.

What you can do:

Support organizations dedicated to Huntington's disease research and awareness. Advocate for better healthcare resources for rare diseases.

Dig deeper:

For more information on Huntington's disease, visit UTHealth's site:  Huntington’s Disease Program | McGovern Medical School  or the Huntington's Disease Society of America at www.hdsa.org.  For the support program that helped Natalie: Huntington's Disease | Help 4 HD International | United States