Jade Oshen Ruiz

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Jade's Journey

Together with the Love of Family and Friends


Jade was a healthy & thriving three-year-old girl whose smile is as contagious as it is cheerful. She was surpassing expectations and hitting her developmental milestones early. With a deep love for the movie Cinderella, the color green and nicknamed “Monkey” she was exactly like any other kid her age. The month of August 2017 however presented itself differently for Jade and her parents, Brenda and Roge. Strange symptoms started to emerge causing Jade to become unbalanced, coinciding with issues walking.

 Brenda sought the help of a local podiatrist and Jade's pediatrician soon after the initial symptoms began to show. It was at her pediatric appointment where the doctors deemed it necessary to investigate further. Jade was admitted immediately to the Denver Children's Hospital following her appointment. While admitted Jade underwent an initial cat scan and upon receiving those results the doctors ordered an additional MRI and spinal tap. Later that week, Jade was released but there was no diagnosis at that time, due to pending lab results. What Brenda and Roge did know is that the MRI revealed inflammation spanning her spinal cord, brain and some cranial nerves. Her parents were told to bring her back to the ER if her condition worsened.  

The pending results were to be due on October 10th but as the days went on, Jade was regressing fast. On Monday October 2nd, when Brenda went into Jade's bedroom to wake her, she knew that they needed to return to Children's immediately. The neurologist in the ER then officially diagnosed Jade with Krabbe disease.

Brenda and Roge immediately began searching for specialists all over the country given the rarity of the disorder. Their determination lead them to several medical teams on the East Coast that study Krabbe disease and other leukodystrophies. Their team at Children’s was also working around the clock to find any additional medical resources for them. The following evening, world renowned neurologist Dr. Maria Escolar of Children's Hospital in Pittsburgh, extended her assistance given she is at the forefront of research on Krabbe disease. Jade's Journey will continue on October 9th 2017 when she and her parents board a plane to Pittsburgh to meet with Dr. Escolar.

At this point, Brenda and Roge have been absent from work and are exhausting every available resource. In addition to comfort, the focus is making sure Jade has opportunities to experience life to the fullest extent.

What is Krabbe Disease?

Krabbe disease (also called globoid cell leukodystrophy) is a degenerative disorder that affects the nervous system. It is caused by the shortage (deficiency) of an enzyme called galactosylceramidase. This enzyme deficiency impairs the growth and maintenance of myelin, the protective covering around certain nerve cells that ensures the rapid transmission of nerve impulses. Krabbe disease is part of a group of disorders known as leukodystrophies, which result from the loss of myelin (demyelination). This disorder is also characterized by the abnormal presence of globoid cells, which are globe-shaped cells that usually have more than one nucleus.
The symptoms of Krabbe disease usually begin before the age of 1 year (the infantile form). Initial signs and symptoms typically include irritability, muscle weakness, feeding difficulties, episodes of fever without any sign of infection, stiff posture, and slowed mental and physical development. As the disease progresses, muscles continue to weaken, affecting the infant's ability to move, chew, swallow, and breathe. Affected infants also experience vision loss and seizures.
Less commonly, onset of Krabbe disease can occur in childhood, adolescence, or adulthood (late-onset forms). Visual problems and walking difficulties are the most common initial symptoms in this form of the disorder, however, signs and symptoms vary considerably among affected individuals.

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4841 Halifax Ct. Denver, CO 80249

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