When I last left you, I had just revealed the 366th act, where my wife and I were going to start the process of adopting a child. We began looking into the process of what to do, where to adopt, etc. when, in March, we were forced to put it on the back burner. That is because we were excited to find out that we were pregnant with our second child. We were beyond excited by the news, and although we have to hold off on the adoption for now, it will happen when the time is right. Well, about 20 weeks into the pregnancy at our routine ultrasound, the doctors discovered that our baby had a heart condition called Tetralogy of Fallot that would require open heart surgery soon after birth. As if that wasn't enough, we were told that the heart condition was due to our baby having a genetic disorder called 22q.11.2 Deletion Syndrome aka DiGeorge Syndrome, VCFS, and like 25 other names. We were surprised to find out that 22q is actually the second most common genetic disorder behind Down's Syndrome, affecting 1 in every 2000-4000 births. Needless to say, we were shocked and kind of scared by the news. However, after a few
One of the first websites I came across while researching 22q was The Dempster Family Foundation. Ryan Dempster, Major League Baseball pitcher (and now WORLD SERIES CHAMPION), started this foundation in order to help an underserved community, and that community became clear after his daughter, Riley, was diagnosed with 22q shortly after birth. The Foundation has made amazing strides in both raising awareness for 22q, providing grants for organizations that help enrich the lives of those with 22q, and providing a sense of community for individuals and families impacted by 22q. I reached out to Michelle Breedlove Sells, the Executive Director of DFF, told her my story, and asked if there was any way that we could partner up. She and Mary Dosek, Director of Fundraising and Special Events, were super open to partnering with me on State of Kind. So I am super proud and excited to announce that I will be partnering with The Dempster Family Foundation on my nationwide kindness journey. Although I will be shining a light on different groups and individuals throughout the country, the overriding theme of State of Kind will be to shine a light on the 22q community to do whatever I can to improve the life of my son and many others. Now that I have caught you up on where I am, I am happy to present the first State of Kind: Indiana.
A couple of months ago, I put a call out on Facebook for people to nominate a single mother who they believe is going above and beyond despite sometimes very difficult circumstances. I chose to do single mothers because I was raised by a single mother, and I wanted to do something where I could help someone out while honoring my mom. I received so many incredible nominations (I'm again realizing how hard it is to actually pick when faced with so many deserving people), but one really stuck out to me, especially because I received it shortly after learning about my son's 22q diagnosis. I received an email from a woman named Melinda who really wanted to help out her sister Lorena in some way. Lorena is the mother to 3 wonderful children who all have special needs: Andrea, who is moderately mentally handicapped after having a seizure as a baby which caused her to be unable to breathe for 10 minutes; Jessica, who suffers from bi-polar disorder and autism; and David, who, at the age of 11, was the second youngest person ever diagnosed with LewyBody Dementia (a 1 in 1.3 million occurrence). David now must reside in a facility with 24 hour care in Indianapolis, Indiana, which is a good 2 hours from Lorena's home. Lorena is unable to work more than a few hours per week due to the time constraints of caring for her 2 daughters at home, as well as driving between Indianapolis, Hebron, and Chicago to visit David and take him to doctors' appointments. Also, due to the lack of insurance, Lorena has been unable to afford a trip to the dentist for the past few years. I reached out to Melinda and let her know that I would like to help out her sister in some way, and that is when I leapt into action.
It seemed as though, due to the amount of driving necessary for David's care, that Lorena was probably spending a significant amount of money on gas each month. So I put out the call to friends, family, fraternity brothers, and a church near Lorena that I spoke at earlier in the year to see if we could get together to raise funds to put towards gas cards to help ease some of the financial struggles that Lorena had been going through. In addition to that, I spoke with Dr. Tim Colby of Colby Dental in Highland, Indiana, to see if he may be able to help at all with the dental issue. To say that everyone came through in a big way would be an understatement. Today, I happily surprised Lorena at a family birthday party for her daughter Jessica by presenting her with nearly $1200 in gasoline gift cards, as well as the news that Dr. Colby would be providing her with a free dental exam. I also got the chance to spend some time with a great and welcoming family, so thank you to Melinda and your family for setting up the surprise! I know it won't eliminate every issue going on in her life, but I hope that it helps alleviate some of the stress that Lorena has on a daily basis. There are so many people that I need to thank, so rather than listing it here in the blog, I will do so on a more personal basis. Well.....1 Down, 49 to go!