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Today I am honored to try and assist a dear family friend, my sister, Jacinta Zepeda’s best friend, Barbara Muro Murguia. I have great admiration for this wonderful, strong, amazing woman, mother, wife and blessed with her newest title Grandma.Barbara is a Delano High School Graduate, Class of 1990. Barbara stayed active by playing baseball as a child and well into adulthood. She is very encouraging and her two boys share her interests and are outstanding baseball players. Barb was a former teacher, family service worker and site supervisor for CAPK, and was a substitute PreSchool teacher for the McFarland Unified School District. I could continue discussing how kind and giving Barbara is, however she was thrown a curve ball. Barbara has been diagnosed with Hereditary Luekoencephalopy with spheroids
HDLS is characterized by leukoencephalopathy, which is damage to a type of brain tissue called white matter (made up of nerve fibers (axons) covered by myelin). Also common in HDLS are swellings called spheroids in the axons of the brain, which are a sign of axon damage. This damage is thought to contribute to the symptoms see in this condition, including personality changes (including a loss of social inhibitions and depression which are among the earliest symptoms of HDLS), memory loss and loss of executive function (the ability to plan and implement actions and develop problem-solving strategies which impairs skills such as impulse control, self-monitoring, and focusing attention appropriately). Some people with HDLS have mild seizures early in the disease and may experience a severe decline in thinking and reasoning abilities (dementia) as the disease progresses. Over time, motor skills are affected, and people with HDLS may have difficulty walking. Many develop a pattern of movement abnormalities known as parkinsonism, which includes unusually slow movement (bradykinesia), involuntary trembling (tremor), and muscle stiffness (rigidity). The pattern of cognitive and motor problems are variable, even among individuals in the same family. Over time, almost all affected individuals become unable to walk, speak, and care for themselves.[1]
Well amongst all this chaos, Barbara has been selected as a candidate to receive a stem cell transplant in hopes of winning her battle against HDLS in Minnesota. However, her insurance does not cover travel, food and lodging. We consider any donation a blessing and would greatly appreciate it if you share this post.
Thank you all in advance.
Organizer and beneficiary
Barbara Murguia
Beneficiary