“Waylon’s Story” Benefit

Waylon DelBoverlando is a two year old who suffers from a rare autosomal recessive lysosomal storage disease called Mucopolysaccharidosis, also known as Sanfilippo Syndrome.

Caused by a deficiency in one of the enzymes needed to break down the glycosaminoglycan heparan sulfate, those affected suffer most from neurological symptoms. (more information below)

The DelBoverlando family is hosting a benefit for the care and support of Waylon on Sunday, September 3, from 1-8p.m. at the Double J’ Saloon, 161 Brighton Ave., Rochester, PA., 15074.

The event will feature live DJing and karaoke, an American Auction, 50/50 raffle, and $10 dinner plates. All proceeds are allocated directly to the DelBoverlando’s.

Wikipedia provides more insight on the disease:

“The disease manifests in young children and affected infants are apparently normal, although some mild facial dysmorphism may be noticeable. The stiff joints, hirsuteness and coarse hair typical of other mucopolysaccharidoses are usually not present until late in the disease. After an initial symptom-free interval, patients usually present with a slowing of development and/or behavioral problems, followed by progressive intellectual decline resulting in severe dementia and progressive motor disease. Acquisition of speech is often slow and incomplete. The disease progresses to increasing behavioral disturbance including temper tantrums, hyperactivity, destructiveness, aggressive behavior, pica and sleep disturbance. As affected children have normal muscle strength and mobility, the behavioral disturbances are very difficult to manage. The disordered sleep in particular presents a significant problem to care providers. In the final phase of the illness, children become increasingly immobile and unresponsive, often require wheelchairs, and develop swallowing difficulties and seizures. The life-span of an affected child does not usually extend beyond late teens to early twenties.”

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