Fundraiser set for local boy, 11, battling rare disease

CHESTER SPRINGS » The Glenmoore Eagle Youth Association High 5 Soccer will be hosting a family 5K and fun run, the “High 5K for Connor” on Sunday, April 19, at 8 a.m. in Chester Springs.

Sanfilippo syndrome, also known as mucopolysaccharidosis type III (MPS III), is a rare autosomal recessive lysosomal storage disease that primarily affects the brain and spinal cord. It is caused by a buildup of large sugar molecules called glycosaminoglycans (AKA GAGs, or mucopolysaccharides) in the body’s lysosomes.

The purpose of the event is to raise funds for Connor Dobbyn, 11. In spring 2019, he was diagnosed with Sanfilippo Syndrome, a rare, progressive and incurable genetic disorder that primarily affects the brain cells and spinal cord. This disease is likened to a childhood Alzheimer’s.

Dobbyn’s cognitive skills, speech, hearing, sight and mobility will continue to decline. Currently there is no cure; therefore, it has a 100 percent mortality rate. The goal is to raise funds to start a clinical trial for a cure for Sanfilippo Type C and give him a chance to live.

Dobbyn has been a part of GEYA High 5 Soccer family for the past five years and is one of the favorite players. He has a contagious smile and exuberant personality.

Once a week, players are paired up with a buddy for soccer-based activities and games that are adapted to their abilities. While a fun outlet is provided for Connor, the mission is to help save him and others from this fatal disease. The surrounding communities of Glenmoore, Eagle, Chester Springs, Pottstown, Downingtown,

and Upper Uwchlan are coming together for the “HIGH 5K for Connor.” To register for the race, go to https://www.racemenu. com/connor.

All proceeds from the race will help fund the first-ever clinical trial for his specific type of Sanfilippo Syndrome (Type C). For more information or to donate, go to www.ConnorBeatsSanfilippo.com.

Dobbyn