Steps for Stevie
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.
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 my little brother, Stephen, age 6, has been diagnosed with the disease. Stephen will face a lifetime of hardships. 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 support research and awareness for the community of people who suffer from Ehlers Danlos. There are so many people like Stephen around the world, who suffer in near silence. Helping to support research and networking for people with EDS is one small step to finding a cure.
By supporting us , 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 6 ear 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.
Here's how YOU can HELP:
1. Come learn about EDS at our Informational Meeting. Tony Yasick, Uncle of Stevie, will speak about EDS. Meet our group members and sign up for other ways to help! Meeting is March 10, 2013 at 4:30 pm. Email me at firstname.lastname@example.org for more details.
*****Meeting on March 10 CANCELLED*******
2. Join our group, "Steps for Stevie"! We are a group that will participate in the Fifth Third River Bank Run on May 11, 2013. You choose your event- we have participants in the 5K Walk, the 5K run, and the 10K run. The only cost to join is the entrace fee for the race and the purchase of a Steps for Stevie t-shirt to wear on race day. We are a group that trains together, so there will be community support to help you achieve your race goals! Email me at email@example.com for more details.
3. Buy a t-shirt! Anyone can purchase a Steps for Stevie shirt! Low cost and profits go to the Ehlers Danlos National Foundation. Email me at firstname.lastname@example.org for more details.
4. Come watch a hockey game! Join us Friday, April 12th as the Grand Rapids Griffins help support Steps for Stevie! Reduced price tickets on $1 hotdog/$1 beer night. All you have to do is go to www.griffinshockey.com/promocode and enter the promo code "STEVIE". The Griffins will donate a portion of the proceeds as we raise money for EDNF.
5. Make a donation! This firstgiving page allows you to make a donation to our cause that will go to the Ehlers Danlos National Foundation.
In honor of Stephen, Tom and the Yasick family, thank you for your love and support!
With love and thanks,
Clara and Aaron Klap
***On Friday, March 8, 2013, the Yasick family lost Mike Yasick, brother of Tom and uncle of Stevie, to Ehlers Danlos Syndrome. Mike was a generous person who touched the lives of so many. We will continue to FIGHT against this evil condition that has taken so many before their time. Please continue to support our efforts, raise awareness, and donate for research. Thank you!
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