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. <\/p>\n
Mom, do I have it? Kiela asked. <\/p>\n
Yes, you do, answered her mother. <\/p>\n
What does that mean? Kiela asked. <\/p>\n
Tears streamed down Kielas face as she attempted to understand what the diagnosis meant for her future. <\/p>\n
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. <\/p>\n
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. <\/p>\n
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. <\/p>\n
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. <\/p>\n
It was the worst day of my life. <\/p>\n<\/p>\n
See the article here: Source: 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, … Continue reading
\nSearching for a cure<\/a><\/p>\n
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