Evanosky Family Story

This is the story of Bob and Sonya Evanosky and their three sons:  John and Christopher, who are identical twins, and Jack, who is 26 months younger. All three boys were diagnosed with a fatal genetic disease known as metachromatic leukodystrophy (MLD) in early 2005 when John and Christopher were three years old and Jack was one.

MLD results when the body does not produce an enzyme known as ARSA.  The absence of this enzyme allows waste products to build up in the body and destroy white matter in the brain as well as myelin around the nerves.  Children affected by the infantile form of MLD typically lose their ability to move or speak in a very short period of time.  Children become medically fragile quadriplegics and encounter a variety of respiratory, feeding and visual issues which ultimately result in death.

In 2005, the Evanoskys were told that most likely none of their boys would live past the age of six.

While researching the disease, the Evanoskys learned that cord blood stem cell transplants were being used to treat MLD at Duke University Medical Center in North Carolina.  After an evaluation by the doctors at Duke, Jack was deemed eligible for a transplant but because Christopher and John’s symptoms had progressed too far, they could not receive the treatment.  Jack received his stem cell transplant on April 1, 2005, making him the second youngest child with MLD to undergo this treatment.  Later, in 2009, John Evanosky participated in a trial that allowed him to receive a transplant using Bob’s stem cells.  Christopher had a similar transplant in 2011.

Today, two of the Evanosky boys are still alive.  In December of 2016 John Evanosky passed on to a better place.  While this continues to be a mournful time for the family, it is with the same resilient spirit that has driven the Evanosky family for years that asks all of their friends to celebrate John's life and legacy.  The other two boys though they are disabled, are healthy, happy and attend school.  Because of their experiences, the Evanoskys are supportive of charities that help disabled children and adults, as well as charities that fight chronic diseases.  The Aspen Lane Wine Company provides a way for the Evanoskys to harness their passion for wine to make a positive impact on others through their nonprofit partners.

Learn more about the Evanosky family and the Aspen Lane Wine Company on the Aspen Lane Wine Company YouTube Channel by clicking HERE.