Steven G. Pepi was born July 2001 and diagnosed with Congenital Muscular Dystrophy (MD).  MD is a group of inherited diseases in which the muscles that control movement (called voluntary muscles) progressively weaken. In some forms of this disease, the heart and other organs are also affected.

MD can occur at different ages of a person's life, ranging from infancy to middle age or later. There are 45 known types of MD, and numerous unknown types.  While some people impacted by MD  enjoy a normal life span with mild symptoms that progress very slowly, other suffering from the disease degenerate rapidly, and live a poor quality of life for a shorter time.   Unfortunately, Steven has one of the unknown types of MD, making treatment and research, as well as his quality of life, highly difficult and challenging. 

When Steven was born, his family was told he wouldn't survive the first six weeks of life.  With the help and support of family, friends, and community services, Steven is now six years old.  Because Steven's form of MD is so severe, however, he requires 24/7 nursing care and lives on a ventilator. He cannot swallow, and is fed by a feeding tube.
  
Transporting Steven is extremely difficult.  Since he does not stand and needs assistance to roll over, or even sit up, he relies on a wheelchair to get around.  After massive financial struggles, the family was finally able to buy an electric power chair crafted to accommodate Steven's needs.  Unfortunately this electric wheelchair weighs over 250 lbs., and Steven's family is no longer able to transport him outside of the home.  A handicap accessible van with a lift must be used, which the family does not own at this time. 

Such vans range in price from $45,000-$60,000.  Sadly, this family has already incurred significant financial hardship over the years and can't afford the expense for such a vehicle.  Steven's family continues its ongoing battle with their health insurance company over expenses incurred, and the company has recently threatened to drop the family from its plan altogether.
 
Our mission for this fundraiser  “Wheels for Steven” is to raise money to help the Pepi family purchase a van for Steven.