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Dear Friends and Family,

As many of you know, my step-dad Tom Yasick passed away on December 10th, 2010 at the age of 42. He died from complications due to a genetic disorder called Ehlers-Danlos, the Vascular Type (Type IV). Tom walked into the hospital on a Monday for a one night hospital stay and by Friday we had to make the decision to take him off of life support. We had  well-respected, knowledgeable cardiac surgeons tell us there was no doubt he had Ehlers-Danlos. They said that in all their careers, none of the doctors that tried to save Tom had seen anything like it. Tom left behind his own mother, his wife, Kathy, his son, Stephen, 3 stepdaughters, 4 grandchildren, brothers and a sister, many neices and nephews, as well as his countless extended family and friends. 

The following description of the disorder was taken from www.ednf.org:
"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."

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.

It breaks my heart to say that this year I am not just running for Tom. I am also running for Stephen, my 5 year old brother, who has been diagnosed with the disease. Stephen will face a lifetime of hardships. He will not be able to do many things, such as play contact sports or participate in other activities that could potentially be harmful. He will need MRI scans on a regular basis and numerous appointments with geneticists and cardiologists.  About 1 in 4 people with vascular type EDS develop a significant health problem by age 20, and more than 80 percent develop complications by age 40. The average life expectancy is 48. There is no cure and no treatment for Stephen. All we can do is hope and pray for more reasearch and options to become available in his lifetime. 

The Yasick family has been struck three times so far by this horrible disease. Tom was preceded in death by his father and brother, who also had Ehlers Danlos. Because the disorder is a genetic disease, each child of someone with Ehlers Danlos Type IV has a 50% chance of inheriting it. I cannot stand by and watch this happen without attempting to help. 

With a devestated heart, a belief that we can beat the odds, and a desperation to help my little brother live a normal life, I am asking you to help me raise funds for research and support for the community of people who suffer from Ehlers Danlos.   I am running the 10K portion of the Grand Rapids River Bank Run- the first 3 miles for Tom and the second 3 miles for Sephen- and I ask that you consider supporting me.  I cannot stand by and watch the inevitable happen. As Lance Armstrong was quoted, “If children have the ability to ignore all odds and percentages, then maybe we can all learn from them. When you think about it, what other choice is there but to hope? We have two options, medically and emotionally: give up, or Fight Like Hell.”

By giving a donation, you will help the Ehlers-Danlos National Foundation provide doctors and the public with information on this virtually unknown disease. You will help the Foundation begin to support more research on the disorder and help to continue the online community they've created for people and families suffering. You will be helping a 5 year old little boy that has already known sadness beyond his years and who faces a lifetime of hardships. You will be helping the future of the Yasick family, along with many other families throughout the country. And, in addition, you will have my eternal gratitude for your generosity and support.

If you are unable to donate, I ask you to please tell someone about EDS. Tell someone Tom’s story. The goal is to not only raise funds, but also awareness. If donating is not an option for you, please ask me for other ways to help! 

In honor of Stephen, Tom and the Yasick family, thank you for your love and support!

With love and thanks,
Clara and Aaron Klap

To learn more about Ehlers-Danlos please visit www.ednf.org