Grace United Methodist Church

In early 2014, Vickie, Tiffany, our daughter, and I ran a 5K race in Columbia which was put on by the parents of a little girl named Eliza. Eliza had been diagnosed with Sanfilippo Syndrome, a rare disease in which very young, normal appearing children began to gradually lose physical, motor, and mental disabilities at a very young age. Sanfilippo Syndrome is a neurodegenerative disease that is like Alzheimer's in children which leads to a short life of seizures and movement disorders, and eventually death, usually in their teens. Currently, there is no FDA-approved treatment or cure for Sanfilippo Syndrome. At the race, Eliza was there, a beautiful little girl who appeared very healthy. I remember watching her that day, thinking how tragic and sad it was that she had this awful disease. However, the money being raised was to go to develop the gene therapy to treat not only Eliza but other children across the United States with this rare condition. Two million dollars was needed to begin the process of developing the necessary gene therapy for Eliza and other children with Sanfilippo. After running the race, hearing Eliza’s mother speak and seeing Eliza there in person, I had to share with my congregation about our experience of being a part of the race along with seeing Eliza, and hearing Eliza’s mother speak. From this sharing, one of the children’s Sunday School teachers began organizing the children and youth to raise funds to go to Eliza’s cause. One of the ways she did so was to have our church youth pass out information at Annual Conference to both clergy and lay delegates. However, in doing so they were scolded and told they could not do it. They did not leave immediately but kept giving out the information for another hour or so. The following Sunday at UMYF, I went and expressed how proud I was of them, our youth, as they had gotten into trouble for doing something good and right. I know they didn’t ask for money but did receive some the night they handed out the information about Eliza and others like her. It wasn’t long afterwards that our church began to receive letters from other congregations across our conference stating they had donated to the web site that had been set up by Eliza’s parents or had enclosed a check so that we might pass it on to fund the cause. If I remember correctly, our youth, through their efforts, raised over a thousand dollars, maybe more. I also remember that it was not too long after our fund-raising efforts that the goal of two million dollars was achieved, allowing Eliza to be the first child to begin receiving the gene therapy. Last time I went online to check on Eliza’s progress she seemed to be doing fairly well. The one thing I wanted the youth to learn from this experience was that God can do significant things through anyone who makes herself/himself available to God. We should never think that God cannot work through us to help others. We might have to be open to doing things that might make us uncomfortable. Are you and I willing to share Jesus and his love with our world? My prayer is that as we continue to navigate post-Covid that we pray for God’s vision for Grace UMC AND that we make ourselves available to God as His love and pursuit of people never ceases.