My Dearest Dany,
It seems like just yesterday we held you in our arms for the first time. As any parents would do, we instantly fell head over heels in love. From that very moment, we dreamed of all the adventures we would have together and planned for all the major events in your life. Today, we long to hear you say “I love you.” We close our eyes and hear your voice but those words do not come. Soon after your birth, you became ill and no one knew what was wrong. You endured one illness after another and bravely fought through them. The expected steps of development were not happening, most of all speech, and to this day you remain silent. It seemed like each week you were either at the doctor’s office or the hospital. Each visit to the doctor left us with more questions and no answers. You were diagnosed with conditions that we knew in our hearts were not the cause. You bravely endured test after test, treatment after treatment that were not effective for any of your conditions. We fought long and hard to find answers for your condition. After pursuing genetic testing, you were diagnosed with Hunter Syndrome, a condition there is no cure for. A horrible condition that will take you away from us piece by piece. We could not settle for what we were being told: “there is no cure.” We rushed to get you treatments that promise to prolong your life. Each week, we travel to the hospital and you are given infusions that last 4 hours. Our hearts break each time we see you courageously going through these treatments. We researched a treatment that is in a clinical trial phase but because you are nonverbal, the odds were stacked against you. When you did not qualify, we did not give up. We worked so hard to teach you other parts of the test in hopes of getting you qualified, and soon you will be retested. Then an amazing discovery happened and we partnered with many people to help fund what we and so many other believe is the cure. Our dearest son, we will not settle for anything less than fighting to find a cure for you and the other boys who suffer with Hunter Syndrome. We will fight for you forever. Each day with you we tell you: You are stronger than you know, more capable than you dreamed, and loved more than you could possibly imagine.
My love, life is not measured by the number of breaths we take but by the moments that take our breath away. Each time we look at you, you take our breaths away.
Love Mom and Dad
Together Saving Dany
Finding and Funding a Cure for Hunter Syndrome