Raymond Pinchak

Story

In April of 2009 our dreams came true when our wild little boy came into this world. Little did we know that our world was about to be turned upside down. Raymond was diagnosed at birth with a sensory neural hearing loss in both ears. At three months old he had his first case of pneumonia along with consecutive ear infections. The well baby checkups were the worst. He was always delayed in his skills, but we forged on with everything the Doctors recommended. Finally at our 12 month checkup we were told that he was so developmentally delayed that they wanted to do genetic testing. We got the most horrific news in January of 2011, Hunter Syndrome or MPS II.

Hunter Syndrome is classified as a lysosomal storage disease (LSD). Raymond’s body is missing an enzyme (or has a dysfunctional) enzyme that does not break down the waste material in his individual cells. They become damaged and eventually die. There is no cure and the only treatment available is considered palliative. After many months of reading, learning about this disease and joining the National MPS Society we were finally able to face the world and share our son. Please join us as we help the Society fund the research to give us a cure. We are SO CLOSE!

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The mission of the National MPS Society is to fund research and provide support for families affected by MPS and related diseases.

Please help our family and support the National MPS Society. Every donation will make a difference in the lives of those affected by MPS and related diseases. Please visit www.mpssociety.org for more information.