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Welcome to our fundraising page for the Ehlers Danlos National foundation! For those of you that know us well, you may remember how we lost our stepfather Tom Yasick very suddenly last winter. The fundraising effort for this page is in honor of Tom who suffered from Ehlers Danlos Type IV. We will be running the fifth third riverbank run in a few weeks in honor of Tom. We are hoping to raise dollars and awareness for the Ehlers Danlos Foundation. Here is a little peice of the story:
Every child dreads the word divorce and even further dreads gaining a "Step-parent". And yet somehow, our family was blessed with a different story. Our mother started dating Tom just before I got married in 2005. We of course, started out hesistant in our relationship to Tom. It didn't take long however to realize what an amazing person he was. To coin the phrase, 'give you the shirt off my back' is to describe Tom. If you needed a shirt Tom most likely would have given you his, and with a smile too! Tom died 42 years too young on December 10, 2010. His body was ony 42 years old but a syndrome called Ehlers Danlos made his body like that of an 80 year old inside. A normal individual's connective tissue is strong and supportive throughout the body, mostly to major organs and arteries. An analogy: It is very much like a strong footing to a large bridge. A person with Ehlers Danlos Syndrome type IV has connective tissue that simply falls apart if it is disturbed. In other words, bad connective tissue is likened to having a rusted away foundation to a large bridge. Builders would not attempt to fix the bridge from the bottom up if it had rusted away. Rather, a whole new bridge would need to be built, a bridge that would support the weight of many cars and passengers. This rebuilding would be the only way to "heal" the bridge. If only the same could be true for Ehlers Danlos Type IV! Currently there is no way to start the process over. There is no cure. No treatments are available for this awful condition. That means any major surgery can be deadly for a person with type IV. For women who become pregnant it can also be deadly, as the uterus has been known to split. Some of the top medical surgeons from our area and even surrounding areas worked on Tom for 12 hours straight. They were flabbergasted by the way he just seemed to "fall apart" in their hands. And we were flabbergasted that a simple overnight procedure had caused someone who appeared to be so young and strong to be taken from us too soon. We all spent a week in the hospital in disbelief. Well, at least my side of the family did. Tom's side of the famliy is another story.
Ehlers Danlos is genetic. Not only did Tom die at 42 years but one of his brothers and his father also died in their forties from complications with this awful syndrome. So to the Yasick family this was not as shocking, they had dealt with it before and it was all too familiar to them. I sat back and watched them all that week in the hospital simply amazed at their ability to hold it together. They are a strong family and I admired the way they dealt with the tragedy of losing Tom. My heart broke for everyone in the family as I had only known Tom for 5 or 6 years and I already felt like I lost a peice of my heart when he passed. I can only imagine what his whole family can be feeling after having lost not just one member but now three!
Soon after all this tragegy, my sister came up with a plan to try and do something. She did not want to stand by and let something this terrible go on. So, the idea came to run the fifth third riverbank run in honor of Tom. We will be running the 5K and we will be wearing shirts with Tom on them. We hope to bring awareness and funds to the cause for Ehlers Danlos. We hope to try and make even the smallest of differences to the poor families that are grappling with this awful syndrome. And we hope that maybe someday their will be a cure or at least some form of treatment.
Our mother and Tom have a 4 year old little boy named Stevie. He was named after Tom's brother Steve who died before Stevie was born. Stevie has a 50-50 chance of also carrying the Ehlers Danlos Syndrome in his genes. I am horrified that my little brother may also die far too young! Please join wih us in trying to make a difference in regards to this endeavor! Even a little donation can add up to much more than you can imagine. I know there are many worthy causes out there, and this one is no more important I am sure. This one just hits close to home for us.
If you would like to donate to the Ehlers Danlos National foundation you may do so through this site. The proceeds do go directly to the Ehlers Danlos foundation via this third party fundraising site. Small donations, big donations, any donations are welcome! We aren't doing this just for fundraising money either, we want to fundraise some awareness as well. Ehlers Danlos Type IV or any type for that matter is very little known. Any reposting or sharing of this website or information is greatly welcomed and appreciated.
Thank you to everyone who has read this far and cared enough to visit our page. May God bless you for all your generousity and care!
Matt and Patty Elgersma