Natalie's Wish Speech

I was given the honor to speak to a group of almost 500 people at the Natalie's Wish Event last weekend.. When a video is available for me to share, I will, but in the mean time I will post the words I spoke... To say that I am honored to stand here in front of you would be an understatement. My name is Lauren Hartz and my first son, Landon, was diagnosed with Cystinosis when he was 14 months old. I wish I could say that was the beginning of our journey, but it began well before that. I have memories of sitting on the kitchen floor encouraging him to take a bite of something, anything. My husband Jimmy used to call me from work to ask how we were doing and what Landon ate. He was losing weight- failure to thrive, malnourished. I felt like a failure. We had test after test to figure out what was wrong and kept getting the same answer. Our last guess as to what may be wrong was an endoscopy procedure and at that time, they collected a urine sample. Again, we learned that something else was not the problem. I was told that there is no medical reason why he wasn’t eating and that we needed to have him admitted to the Children’s Hospital in Pittsburgh for intense feeding therapy. I was told when getting instructions for admission that they were going to collect another urine sample. There was sugar found in his urine which was probably a fluke but they needed to be sure. That was the first thing they did and soon after, the nephrology team presented, like a small army, in our room. We learned a new vocabulary only several hours into being admitted… fanconi syndrome, cystinosis, transplant… It felt like a nightmare. They told us not to Google Cystinosis. Jimmy made me promise not to but my mind was thinking the worst. I did and that’s when we came across the CRFs website. Nancy quickly responded to my e-mail. Cystinosis wasn’t even yet confirmed and already we trusted her. She promised that amazing research was happening and that we were in this together. After the diagnosis was confirmed, Jimmy and I started talking about things we could do to raise money and contribute to research to find better treatment and a cure. We had to do something. We felt so helpless. Five months after he was admitted to the hospital, we held our first fundraiser, a Halloween party with our family, friends and others in our community. It was empowering and since then we have had 9 fundraisers and have raised $160,000. I don’t know that I can go so far as to call Cystinosis our blessing, but this journey certainly has been. There are moments that are so hard. It’s heartbreaking to watch Landon try his hardest to keep up with his peers when he plays sports, to see him become lethargic after too busy of a day, when someone comments on the smell that is caused by the medicine that keeps him healthy, when we see his Mic Key button causing him discomfort, having to hold him tight as he screams and cries during regular blood draws, and each time we lay him on our laps to give him eye drops. Normal illnesses that kids get put us on alert because we fear that he will get dehydrated and end up in the hospital. And let me tell you a secret, I’m traumatized from that month long hospital stay and anytime I think about going back my heart races and tears fill my eyes. But let me tell you about the blessings… The Stack family, the community of people who we have come to love so much that include people who I talk to regularly and who I consider to be my best friends, watching our family and friends work tirelessly to organize our fundraisers, the goodness and generosity that we witness all of the time, the lessons we have learned about what is important and about being grateful and present. Those are just few. Recently I had to change Landon’s Mic Key button which is so challenging. He screams and cries and begs me not to do it. Afterwards, I held my crying boy tightly whispering that I am sorry. He looked at me and asked if I know any inventors or magicians. Landon has a huge imagination so I wasn’t sure where this was going. He told me that he needs to find an inventor or a magician to help make his belly not hurt anymore. I felt tears fill my eyes and then found myself saying, “buddy, I know lots of inventors and magicians who are working hard to make sure that your belly stops hurting. They are the people that we will see in California.” To all who support Cystinosis research, I am thankful. To those who raise awareness, I am thankful. For those who dedicate their careers to finding better treatment and a cure, I am so thankful. And to all of you, who have made our cause, your cause too, I am forever thankful. Thank you.