BeeJay Acker-Hitta looked at Kiela, her 10-year-old daughter, uncertain of how to tell her she had Friedreichs ataxia, a disease that would overcome her body and eventually end her life.

Mom, do I have it? Kiela asked.

Yes, you do, answered her mother.

What does that mean? Kiela asked.

Tears streamed down Kielas face as she attempted to understand what the diagnosis meant for her future.

Twelve years later Kiela and Acker-Hitta have participated in countless fundraisers to raise awareness for the deadly disease, which has no treatments or cure. Kiela will be escorted by her uncle to the Ride Ataxia, a cycling fundraiser in Davis on May 5.

Friedreichs ataxia is a life-shortening, degenerative neuro-muscular genetic disorder that affects 1 out of 50,000 people in the United States. Symptoms include loss of coordination, fatigue, vision impairment, curvature of the spine, diabetes and heart conditions.

The mental capabilities of people with FA remain intact, although the progressive loss of coordination and muscle strength leads to motor incapacitation and the full-time use of a wheelchair.

Kiela started showing symptoms at age 6. She had cardiomyopathy, often referred to as heart muscle disease, which usually leads to heart failure. She started using a walker by the fifth grade and was wheelchair bound by middle school. After more than four years of testing at UC San Francisco, Acker-Hitta took her daughter to Shriners Hospitals for Children in Sacramento. After a muscle biopsy, a spinal tap and blood tests, Acker-Hitta received a phone call.

It was the worst day of my life.

See the article here:
Searching for a cure

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