Annual Rare Disease Day takes on a more personal meaning to one Castaic family that has been battling with a rare genetic disorder that affects only 1-70,000 children.
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“If you feel like you would want to to or have other people support Carter and other children battling Sanfilippo Syndrome, we ask that they not only wear jeans that day but also something purple as that is the color associated with Sanfilippo Syndrome,” said Jennifer Sarkar, Carter’s mother.
Since 2008, each year on February 28, patient organizations around the world take the time to bring awareness to some of the less prominent but equally deadly diseases affecting patients everywhere with Rare Disease Day.
Carter, who lives in Castaic with his mom, dad, and sister, is currently fighting Sanfilippo disease—a rare, uncured autosomal disease most commonly found in young children.
“(Sanfilippo) takes away their speech and language (abilities) usually around age 5. (There’s a) chance of hearing loss, chance of seizures and loss of all independence and mobility. He will be wheelchair-bound. His organs will (eventually) fail and he will likely pass away by his mid-teens,” said Jennifer Sarkar.
Rare Disease Day was created to help spread stories like these and bring awareness to the countless deadly diseases out there and hopefully work towards finding cures.
In the Unites States, a rare disease is defined as any disease or disorder that affects fewer than 200,000 Americans at any given time.
About Rare Disease Day: Rare Disease Day takes place on the last day of February each year. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives.The campaign targets primarily the general public and also seeks to raise awareness amongst policy makers, public authorities, industry representatives, researchers, health professionals and anyone who has a genuine interest in rare diseases.