PCMS RAMS OUT ALD

PCMS RAMS OUT ALD

From Allison Silverman

To help the Rojas family with the tremendous medical costs of having two sons who have been diagnosed with Adrenoleukodystrophy .

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Brandon Rojas, 9, and his brother, Brian Rojas, 6, have been diagnosed with the devastating disease x-linked Adrenoleukodystrophy (ALD), which is a rare genetic brain disease that causes rapid deterioration to the brain functions causing blindness, seizures, and dementia.  This disease is irreversible and life threatening, and although incurable at this time, treatments for ALD are available with early detection.  

Sadly for Brandon, the diagnosis came too late.  Brandon was diagnosed in 2014 after his parents noticed a rapid decline in his coordination and ability to focus.  Within a year, Brandon lost his ability to speak and walk.  Currently, Brandon has a wheelchair for mobility and a feeding tube for nutrition. He requires various medications, and suffers from sudden seizures making it necessary for his parents, Paul and Liliana, and nurses to monitor him around the clock.

Due to Brandon’s diagnosis, Brian was also tested. An MRI showed signs of ALD, but Brian was fortunate to have been diagnosed before suffering any damage to his brain.  As a result, Brian is able to receive GeneTherapy, which halts the progression of the disease.

At Port Chester Middle School, we are a close-knit family, and we are asking for donations to support the Rojas Family!  

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