jonah

This coming Friday Bella Via will be home to a fundraising event for the charity Jonah’s Just Begun called Bunco, Bid & Boogie.  Jonah is a sweet young boy that was born with Sanfilippo Syndrome.  What is Sanfilippo Syndrome? Sanfilippo Syndrome is caused by a defect in a single cell. It is an inherited disease of metabolism that means the body cannot properly break down long chains of sugar molecules called mucopolysaccharides or glycosaminoglycans (aka GAGs). Sanfilippo syndrome belongs to a group of diseases called mucopolysaccharidoses (MPS). Specifically, it is known as MPS III.

Sanfilippo is an insidious disease that often goes undetected for years. Most children are born with no visible signs that anything is wrong. It’s not until the preschool years (or later with some type C cases) that children start to show delays or deformities; even then, the disease is often misdiagnosed. Highly specialized and focused testing must be done in order to diagnose Sanfilippo.

Currently there is no cure for Sanfilippo Syndrome. In most cases, treatment is limited to reducing or controlling the symptoms of this disorder by making sure that neurologists, ophthalmologists, cardiologists, ENTs, orthopedicians, dentists and genetic counselors are consulted routinely.

We are excited for a fun night to raise money and awareness of this disease.  To find out more information or to donate to this cause please visit their website at http://jonahsjustbegun.org/