Everything hit hard after the actual diagnosis. My husband and I were nervous, scared and confused as to what Dent disease actually meant for our son’s future. After the confirmed diagnosis that we are in fact “affected” with this disease, I felt the need to deal with this head on. My job as a mother is to protect. Putting actions into place was the only way that I felt I could try to make a difference in this overwhelming feeling that I was experiencing. I began researching Dent disease by reaching out to individuals that would take the time to actually speak with me personally. I wanted to know the ins and outs of Dent disease. I wanted to know all about it, but the information just wasn’t there and accessible like I was hoping for. I spent many, many hours searching and yearning for that one person who knew enough about this disease that they could put my mind at ease that all will be okay for my sweet little boy, and confirm that we can actually do something about this diagnosis. Unable to find that one person I soon realized that this is going to take collaboration between many great minds in order to make progress on a treatment or ideally a cure.
I took my son to establish care with Dr. David Sas at the Rare Kidney Stone Consortium at Mayo Clinic in Rochester, MN. I then searched out the most skilled and knowledgeable doctor here in our state of Utah, Dr. Raoul Nelson. Knowing that I have top notch physicians caring for my son is the one thing that has helped to put my mind at ease. Next, giving my son water, water, and more water. Water became a word used way too much in a home. It is also one of the most single-handedly important aspects of maintaining a life with Dent disease. This is our new normal now, having water available everywhere we go. Encouraging my son to drink his water every day is a delicate balance to maintain. It is not easy to drink all that water for a young child. Recognizing this and helping to encourage and not frustrate will be a lifelong goal. Along with taking some medications, this is what we do on a daily basis to help control and manage my son’s Dent disease. My boy’s kidney function goes up and down depending on how well hydrated he stays. It scares me and of course I wish he would drink more, but I have to sit back and look at how much worse it really could be. My son is healthy. He plays like every other 7 year old little boy. He jumps from treehouses, builds forts, plays soccer, skis, wrestles with his brother and lives a “normal” life. Life is normal except that he has a chronic disease that he has to live with. But it is not just my son who lives with it every day, our entire family shares this responsibility. There is one thing that gives my heart peace when I begin to worry about the future or become overwhelmed. Everyone in the world has something that we are dealing with. It will present in many different ways individually. Some may not know it yet but there will be something that presents in everyone’s life that will affect them unconditionally. The key to acceptance of a chronic disease is first being honest and forgiving of yourself. This was not your choice and it is also not your fault. Again, this was not your choice and it is not your fault! Say that over and over until you honestly believe it. Then when you think you believe those words, strap up those boots and let’s go and find a cure for this disease together. We can do it. I have no doubt in my mind. It will not be easy, but what good comes from easy work anyways? I am here for you all. I will stand by your side and fight like hell for a cure for this disease. I will be a listening ear for anyone who may need it. I commit to always be a strong, never-settling advocate for my son, my father, my nephews, and all others living with Dent disease.
