Kyler’s Story

Kyler Wayne Kasper was born on August 2nd, 2007 to Todd and Sarah Kasper and big brother Hagen Schader. He was a blessing from the beginning, and a part of all of our lives that we will forever be thankful for. Kyler has had some medical issues that seemed to be normal as an infant, but at 16 months of age, Kyler fell very ill. I noticed that he was not acting normal, and this is the hardest part to talk about as a mother. I have said over and over again that I will never forgive myself for waiting so long to get him in to the doctor. The Lord was watching out for Kyler as we got him seen just in time. Before we got him in to see his pediatrician, he was very weak and would just sit there. He was not eating and was sleeping all the time. He had big blisters on his lips and others would say to me “Sarah, he is so pale.” He would not walk, and I remember getting upset because he wanted to be carried everywhere. I have experience as a mom and I thought it was the flu. My husband had said many times that we should just ride it out. We would lay him down in his crib and he would go right to sleep, and now that I understand what he was going through, I often wonder if he was passing out. He did not want anyone but me, and I would get so frustrated when he would cry and I could not help him. It has been the hardest thing as a mother that I have ever known. He is so perfect, and so handsome, I did not know I was losing him by the day. I will never let myself live that down, and I still have nightmares of little things that I should have noticed. Little things, that as a mother, I should have noticed.

Kyler smiling for the camera

Kyler smiling for the camera

One day in November, I decided to take him to the doctor because the “flu” had gone on long enough. When his doctor saw him, she ordered lab tests right away … Everyone was staring at him; he must have looked really pale. I bet every doctor in that place just took a peek while we were waiting for the lab results. They pulled me in to give them the results of 2 Hemoglobin and a 6 Hematocrit. The normal for a person is 14 and 22. He was hours away from death, and I did not know it. We were rushed to the local hospital with no clue as to why his levels were so low. They said they thought it was a hole in his heart and we would be rushed to the Arkansas Children’s Hospital. He was still so quiet, not a worry in his eyes. He only wanted his Mommy.

The ambulance ride was so long. They let me go with Kyler, and Todd came in the car. I remember just holding him and praying so hard. I was trying to figure out how I was going to leave the Arkansas Children’s Hospital without him, how was I going to do something like that. I could not stop crying, it was a steady stream. I prayed that the Lord would take away all of my bad thoughts and I gave it all to him. It was about that time that the paramedic sat beside me near the bed and asked if I was ok. I just looked at him because I was not OK. I then worked up the courage to ask him if he thought Kyler was going to die. He said he had never seen numbers that low before, but he also had not known of many who die from Anemia. That was the first time I had heard that word, Anemia. He tried so hard to keep my mind clear, and I will always be thankful for the small conversation that we had, even though I never even asked his name.

Kyler clung to me so hard when they got us into the ER in Little Rock, and the nurses there were so perfect … It was amazing. I was very upset and wondering when my husband was going to show up. They needed to start an IV in his little hands and his veins were almost non existent as he was so dehydrated. They turned off the lights, turned off the TV and said, “let’s do it.” They lit his hand up with a blue light while I was holding him and they stuck him one time … that is all it took, one time. It hurt him really bad, but they started IV fluids and he calmed down. He acted like it felt so good to get something in his body.

Kyler at the hospital

Kyler at the hospital

They admitted Kyler to ICU and started blood transfusions from there. They told us right away that it was not a hole in his heart, but his bone marrow was not working. I did not understand what it meant, other than he would not need any form of surgery. He had a total of 9 blood transfusions and a bone marrow biopsy while he spent a week in ICU at the Arkansas Children’s Hospital. We have continued to have blood transfusions and steroid therapy from that day in November. Kyler is a trooper and is so happy, even when he is getting poked with many needles. He has received the diagnosis of Diamond Black-Fan Anemia.

Kyler is full of personality and will do anything for a laugh. He is a very funny boy and knows how to tell you what he thinks of something and will get his point across. He makes funny sounds and faces to go with it. He is so smart and you would not know he is sick just by looking at him. He will steal your heart in a second and I know he was given to my family for a reason. He loves tractors, Thomas the train, Dora and Boots. SpongeBob is royalty in our house, and anything that has to do with the water. His favorite person in the world is his older brother. He gets so excited when Hagen comes home from school or even takes the time to play with him. He has to do everything bubby does, or make bubby do everything Kyler does.

Hagen is my 7 year old and does not understand any of this. He knows his brother is sick and he gets a lot of attention. Hagen is very patient with his brother, but on the other hand treats him like any other little brother around. They fight and play and sleep on the couch together. Hagen has been with us to have blood transfusions and he helps keep Kyler occupied in the hospital room for 4 or more hours at a time. He is a good boy and deserves the best.    

Kyler and Dad at Arkansas Children's Hospital

Kyler and Dad at Arkansas Children's Hospital