Young man dies of Prader-Willi Syndrome

New York 2007, Nina Roberto, director, Prader-Willi Alliance of NY

25 year old Chris Leppard had suffered a lifelong struggle with Prader-Willi Syndrome, (PWS), died an untimely death on May 15, 2007.  Prader-Willi syndrome is the most common known genetic cause of life threatening obesity in children and is a life-long condition to which currently there is no cure. PWS occurs in approximately 1 out of every 12,000-births and equally affects both males and females and all ethnic backgrounds. PWS symptoms are caused by a dysfunction of the hypothalamus in the brain which regulates hunger and many other systems in the body. Individuals with PWS feel hungry most (if not all) of the time and yet can only eat about half the calories of an average person.

Chris was young, and like most of us, he had dreams.  Dreams to be independent like the rest of us and wanted to show the world that he could live on his own.  Unfortunately because of PWS, this dream did not turn into a reality and resulted in his subsequent death. 

He suffered much during his struggle to fight off the uncontrollable and painful urge to eat.  Because of his remarkable weight gain, authorities needed to intervene.  His weight escalated to over 500 pounds.  He was committed to a mental hospital because authorities felt that he was a danger to himself.  One week later, doctors discharged him after concluding that he was not mentally ill and sent him to the Eastbourne clinic and was released after being assessed at a eating disorder unit.  After this ordeal, he began a strict exercise regimen and lost an amazing 65 pounds.  His weight continued to be an obstacle. He developed celulitis in his legs and was confined to an arm chair unable to continue his workouts due to the pain.  Consequently, he gained much more of his weight back. He became quite ill and was admitted to the hospital where 2 weeks later, died of a heart attack.  He weighed 540 pounds when he died.

Funeral services were held on June 1 at the…In the windows of  hearse that carried him to Hastings Crematorium, flowers spelled “MY BOY”.  His mother followed in a limousine behind him.

The Prader-Willi Alliance of N.Y., Inc. (www.prader-willi.org) is a non for profit organization that works closely with doctors, parents, and caregivers to assist with awareness, early diagnosis, early intervention and early medical intervention, all of which Chris Leppard’s mother Anne wishes he had the opportunity for stating, "I wish he had been given the help when he was 13. Maybe then he could have gone on to lead a relatively normal life."  Awareness leads to early diagnosis which leads to proper medical intervention and care.  Because of this, in the United States, young children with PWS are relatively age and weight appropriate however, the insatiable appetite continues and needs to be controlled through a low fat low calorie diet. Also with the use of growth hormone, (which helps with lean muscle mass), obesity is not as much of an issue.

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dated: 11/24/2007