Stonybrook Spotlight: Oliver Scheier!

Oliver Scheier loves Stonybrook Day Camp because of the counselors, his friends and tennis.  He also loves dress up days, and everyone at Stonybrook loves seeing his fabulous costumes and creative spin on a good theme.  We also love Oliver because he is an extraordinary boy and an inspiration to many.  While he suffers from a rare form of muscular dystrophy known as rigid spine muscular dystrophy (RSMD), he shows us everyday that RSMD hasn’t stopped him from living a full life.

In fact, this is his 2nd summer at Stonybrook.   He is in the mix with all his friends and with some modifications that camp provides, he can do just about anything camp offers.  Oliver has 4 fabulous counselors including Brian Grise, who sometimes gives him piggy back rides from one activity to the next when he can’t run as well as he would like to. Oliver has chosen to fit RSMD into his life rather than let it rule his life; camp is one of many ways he makes that happen.

With only 70 cases reported worldwide, very few people know about RSMD. The Scheier family however, has had to become experts on the topic in order to help Oliver navigate life with RSMD.  After years of searching for answers, they actually feel lucky that they have a diagnosis.   Oliver’s parents, Mindy and Greg, knew something wasn’t right with their son’s development when he was a baby.  He had low tone; he could not move his neck and he was floppy in his movements.  They spent years seeing doctor after doctor and Oliver had every test imaginable.  New tests were developed every year based on research, and when he was 4 years old, his Neuro Muscular doctor suggested they test him for RSMD so they could rule it out.  To everyone’s surprise, it came back positive.    

With Oliver as their inspiration, The Scheier family is on a mission to raise funds for research and awareness about RSMD and other forms of muscular dystrophy.   Since very few people have RSMD, Oliver’s family does not have a strong sense as to what his future will be like.   They want to do as much as they can to bring more clarity to the condition and maximize the quality of life for Oliver and others like him. 

To date, the Scheier family has raised over 130K over the past two years.  Their main event is Olliepalooza, a night of food, drinks, live and silent auction and more to benefit Muscular Dystrophy research.  This year, the event will be held on August 2^nd at the Crimson Night Club in New York City.  This is the third annual Olliepalooza and the Scheier family is counting on this to be the best one yet.  Stonybrook families interested in supporting Oliver and his family by attending the event or making a donation for the silent or live auction can visit https://secure.mdausa.org/olliepalooza 

And Oliver takes an active role in all of this as well; not only does he look forward to a fundraiser, he is also a poster child for many other Muscular Dystrophy Events.  He also participates in many research opportunities.  In fact, at the end of the summer Oliver will be headed to the National Institute of Health in D.C. for testing, which has been arranged by the Muscular Dystrophy Association.  Now we all have post camp plans, but that may top the list in terms of importance.  Oliver, we are impressed and we hope Olliepalooza is a huge success.  And, we are certain it will be!

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