Fighting Your Fight For A Cure
Join the Fight!
December 10th, 2010 at the age of 42, my step-dad Tom Yasick passed away from complications due to a genetic disorder called Ehlers-Danlos, the Vascular Type (Type IV).
"Individuals with EDS have a defect in their connective tissue, the tissue that provides support to many body parts such as the skin, muscles and ligaments. The fragile skin and unstable joints found in EDS are the result of faulty collagen. Collagen is a protein, which acts as a "glue" in the body, adding strength and elasticity to connective tissue.
Vascular Type is generally regarded as the most serious form of EDS due to the possibility of arterial or organ rupture (www.ednf.org)."
Someone with EDS doesn’t look or act sick, but they are. Your tissue is what holds every piece of your body together. The surgeons used the term “wet paper towel” to describe the consistency of Tom’s body tissue. If any of you met him, you would never know that he was someone suffering from this horrible disease. EDS often goes undiagnosed or is misdiagnosed. Many do not know they have the disorder until it is too late. Even if EDS is properly diagnosed, there is no treatment and no cure (average life expectency 48 yrs).
Because the disorder is genetic, each child of someone who has Ehlers-Danlos Type IV has a 50% chance of inheriting it. Stephen Thomas Yasick is Tom's only child. Stevie tested positive for EDS in 2011 at age 4.
April 28, 2013 Fighting Your Fight For A Cure will take place at Blue Gill Disc Golf Course, Wayland, MI.
Please join my family and the Michigan disc golf commuity in Fighting Your Fight For A Cure to raise awareness and support in hopes to someday find a cure for Stevie.