When Imana, 6-year-old daughter of Gayla Culp of Carrollton, began to struggle with her speech and motor skills, the family began a long journey to her diagnosis: Youth Huntington’s Disease—a condition that typically appears at adult age. Huntington’s disease is a genetic disorder that can cause sudden physical and cognitive regression, and in some rare cases a child with the gene will begin demonstrating these symptoms during her younger years.
While there is currently no cure for the disease, parents in North Texas are joining in the effort to bring more awareness to the condition and offer support to area families. A parent carrying the gene has a 50-50 chance of passing the disease on to a child, says Cheryl Lenheiser, a social worker with Texas’ Huntington’s Disease Support Association (HDSA). Culp, who was unaware of Imana’s father’s genetic history, struggled for two years to find a diagnosis for her daughter.
After Imana’s diagnosis, Culp jump-started a nonprofit, the Imana K Foundation, to unify parents of Youth Huntington’s children, to raise funds for research and offer each other support at meetings and activities. Another support group has cropped up for parents, as well, says Lenheiser: The Mesquite-based support group founded by the HDSA meets frequently throughout the year, offering support to friends, neighbors, spouses, caregivers or anyone who wants to learn more about Huntington’s disease (see www.hdsatexas.org for a schedule). The HDSA also has a helpline available year-round, 800/910-6111.
