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Four Yr. old Holly Lake Child diagnosed with rare disease

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Four Yr. old Holly Lake Child diagnosed with rare disease

By Jamie Jones

Noah Coughlan's mission for the past four months has been raising awareness for a little known, always fatal disorder, Batten Disease. Noah, a California resident, began his cross country run Feb 28, averaging 25-30 miles per day despite heat or rain. Noah dedicated one day of his awareness run to one of only four known children in Texas with this rare disease, Casen Michael Cameron of Holly Lake Ranch, Hawkins. What is this deadly disorder?

Batten Disease is a genetic brain disease that affects only 450 children in the United States. Children with Late Infantile Batten Disease, the classic form of the condition, reach most developmental milestones until 2 – 4 years of age, when the distressing symptoms begin. Many times, Batten Disease begins with vision loss, seizures, and loss of coordination, and is often misdiagnosed as epilepsy. The disease progresses rapidly with spasms, difficulty eating and drinking, inability to walk or talk, mental deterioration, and dementia. The disease eventually leads to early death between the ages of 8-12.

Four year old, Casen Cameron was officially diagnosed with Batten on June 21 after two years of tests, procedures, and multiple cocktails of medications. Casen met most developmental milestones, with no sign of any problems, until he began having seizures at 2 years of age. Worsening symptoms continued with more frequent seizures, loss of motor skills, and mental regression. Casen's shrinking vocabulary consists of few words, which become more difficulty for him to communicating every day. Shaking, unsteadiness, and muscle weakness prevent him from walking unassisted or crawling any considerable distance.

Due to the rareness of Batten, researchers are unable to procure any sizable government funding for research. Therefore, at this time, no treatment or cure is available. Almost all funding comes from private donation and fundraising; hence, the importance of Noah's run. Noah's 2400 mile run across America has raised $20,000.00 thus far, for Batten Disease Research and Support Association (BDRSA). While traveling back to California, Noah made a special stop in Longview on the July 19

th to visit with young Casen and his family. Casen's father, brother, and grandmother were elated to have the opportunity to express their gratitude in person for Noah's dedication to the cause. The family has started a fund in Casen's name, Casen's Crusade – Fighting Batten Disease. Donations can be made at any location of CNB Bank, with all money being donated to Batten Disease Research and Support Association (BDRSA), in honor of Casen. For more information, or to make direct donation, visit Casen's Crusade on Facebook or contact Pamela Cameron at 903-769-3771.