The story of Titan
Hello world. My name is Titan. I was born with an rare genetic disorder called Carnitine palmitoyl transferase deficiency type 2 or CPT2. I was born a normal, healthy baby and I was beautiful! Let me tell you, I was perfect. Since I arrived a few weeks before my due date, the symptoms I started showing a few hours into life were very normal for an early late term baby. My sugar levels were low, I had jaundice, my temperature was low. Then I stopped breathing. I was transferred to the nearest children’s hospital which was CHKD in Norfolk, Virginia not far from home at all. There, they found I was having seizures and my heart stopped twice but the doctors and nurses there saved me!
A few days later after lots of struggle, the genetecist there had figured it out and sent for emergency testing to confirm. She delivered this news to my parents with a heavy heart because babies do not survive long with this disease. A few weeks to a few months. My parents were not discouraged because this meant hope. Hope that God would work a miracle. They prayed and believed I would make it home. Less than 20 cases of this condition and type had previously been recorded and none had come through this hospital ever. So needless to say, I was a super star! So many people came to look over me for the next few weeks as I got better.
My favorite visitors were Mom and Dad. They came every day. They talked to me, held me, gave me kisses, sang to me and let me listen to music. I felt a little bit stronger each time I saw them. After I started breathing on my own, and gaining weight by a special formula (Monogen) that my body could break down, they told my parents to take me home! Oh what a beautiful day. I continued to show off at home and at doctor’s appointments. I even got off that feeding tube and drank all my milk in bottles. I liked tummy time and dancing and singing but I LOVE my big brother Kylo. He is just the best! Little did anyone know my heart was getting weak.
The day after Christmas 2019, I left this world. It happened suddenly and well, I just went to sleep. The doctors couldn’t bring me back because it wasn’t meant for me to stay. My parents, everyone who loved me so much while I was here, couldn’t understand why. I know how much they wanted me to beat the odds. But I did! You can’t hurt a Titan. There are other worlds than these and you will see me again. In loving memory of our sweet angel..now heaven’s warrior.