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THANK YOU TO ALL FOR HELPING US HIT OUR INITIAL GOAL OF $6000. A year of travel is covered. We have a few more years of travel ahead of us, it would be great to cover two years!!
News story about the awesome group of students raising money for Sam:
http://www.wbay.com/story/19610224/2012/09/21/students-raise-money-for-child-with-rare-disorder
See our gallery for more News coverage videos!!
Sam's Story
Our son, Sam, was born with a rare genetic disorder called Microvillus Inclusion Disease on March 7, 2008. The simplest explanation for what Microvillus Inclusion Disease means for Sam is that his intestines do not work properly. Because they do not absorb nutrients like most people, he has to be supplied with all of his nutrition through an IV. In Sam's case this is done through a central line that starts in the center of his chest, tunnels under his skin to a vein in his neck and then travels down that vein to a spot close to his heart.
We were able to take Sam home from the hospital on May 29th, 2008, but very shortly after Sam began to show signs of TPN associated liver disease. We made plans to take Sam to Children's Hospital Boston for an experimental treatment to help reduce and prevent the liver damage he was experiencing.
After working with the team at Children's Hospital Boston, Sam became their ninety-fourth baby to be treated with Omegaven, an investigational treatment of refined fish oil, for his TPN associated liver disease.
Sam is able to receive Omegaven as part of an investigational study at Children's Hospital Boston, but we must travel there every eight weeks in order to remain in the study.We were hopeful when we started this journey that Omegaven would be approved for use in the U.S. by 2010. Approval has been delayed and we will need to continue these trips for possibly another two to four years.We are not able to obtain Omegaven locally as our health insurance does not cover investigational treatments.More information available about Sam at www.samoconnor.com
What Your Donation Will Do
In order to continue these frequent trips to Boston, we need to raise fund to cover travel expenses for Sam and one parent until the drug is approved by the FDA and we can receive it locally. Raising our goal of $6000 will cover airfare to Boston for one year. Any funds raised over the goal will be used for additional trips to Boston in the coming years and a portion will be donated to the Omegaven research program at Children's Hospital Boston.
The Impact
Without a doubt, receiving Omegaven has saved Sam's life. Four years ago we were told he would not likely live to be two years old. He has beaten the odds thanks to all of those that have continued to support him.
Other Ways You Can Help
Some people just can’t contribute, and that's OK. You can still help! Sharing Sam's story with your family and friends by word of mouth, email, facebook, or other social media will help get the word out and reach the biggest audience possible.
Team on This Campaign:
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Jason O'Connor
Father
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Deb59Mother
