Hello and Welcome to Skyler's story. Please take the time to read about a precious lil boy who fought so hard. Skyler brought love in it's purest form into our world, where we thought we knew what love was. With endless sunshine he brightened our lives through his beautiful smiles and his wonderful hugs. Skyler was our miracle that God lent us. Skyler was special, we knew that from the start. Skyler was born with Down Syndrome and a heart defect called "Complete AV Canal." We were told surgery could fix his heart but we were also warned that we might lose him. Skyler Edward Aarvig was born on May 2, 1999. He weighted 8lbs. and was 19' inches ~ He was beautiful. Skyler had his heart repaired on the last day of August 1999 and only after a week of recovery, he was able to come home. Shortly after returning home he was readmitted for a couple major staph infections. One was sternal, the other was blood. Between his in & out of C.H.O.C. for Pneumonia, high fevers of 104.7, and vomiting of blood just to name a few, Skylers personality bloomed and his smile let up every corner of our lives. Shortly before his heart repair, we were told Skyler had PH (Pulmonary Hypertension) but we didn't realize how severe it was until many months later when we were told Skyler had a year to live. On February 14, 2000 Skyler was admitted to C.H.O.C. and almost died, we were told to think about our life support options. Skyler was given I.V. lasix and it worked to clear his lungs of fluid. He was taken in for a Cardiac Catheterization two days later. The doctors were going to try an experimental drug called Flolan. Skyler's odds going into the procedure were very small but he beat them all and didn't even need to be put on a ventilator. The Flolan worked minimally, our next move was to have Skyler life flown to Children's Hospital Los Angeles to have the central line inserted and the medicine started on a mini pump which Skyler would wear as a backpack 24 hours a day, 7 days a week wherever he went. We were told the medicine could possibly give us another year with our son. Before we could go to L.A. the doctor came into the room and told us that Skyler had been denied the Flolan and that he would have to be weaned off the medicine. Then we were told that there was nothing else they could do for him. We brought Skyler home on hospice knowing he was going to die but we wanted out sweet beautiful sons last days to be those filled with love, laughter, hugs, and kisses in his home with his family who loved him by his side. No machines, needles, or nurses to bother him, just his family caring for him. Skyler's first day home was great, he laughed, smiled, played with his toys and told us without words he loved us. The second day he was very tired and sleepy, yet he managed weak smiles between his frowns. He was in pain, he was dying and we knew it. He slowly fell into a deep sleep as his lungs filled with fluid. I held him the whole night. He was on Morphine so we knew he was feeling no pain as he slipped away. An hour before he died, my 9 year old daughter Candice asked to hold Skyler, I asked her if she was sure due to his condition. She firmly stated "yes". I put Skyler into her arms, and weeping periodically she held him close telling him she loved him. Skyler died at 7:20 am on March 4th, 2000 in her arms. Skyler left behind many memories that continue to live on in our hearts. I remember when he was in the hospital, we wanted to give him a change of scenery so from time to time we would put him on a pillow in a little orange wagon and pull him around the halls. His eyes would light up looking all around and he would end up staring at the lights on the ceiling. He would smile and would could feel his joy of being out of bed. Another fond memory is how his smile could tell you he cared for a person. He saw his cardiologist so much that he came to know him as someone he liked. Whenever Dr. Rebelledo would come near Skyler he would smile and touch his hand as if to say hello. The most treasured memory in my mind is so special because Skyler was so sick so often. We never took him outdoors and there was even a time we thought we would never be able to. By the grace of God, and the very talented doctors, Mike and I were able to take him outside. We took him into the front yard and put his little bare feet into the grass. It was so beautiful watching him in awe of his new environment. He was all smiles, his eyes darting everywhere, his hands and feet kicking and grabbing at the blades of grass. He loved being outside. The sheer delight in his eyes and smile told us so in a huge way. We miss out beautiful child very much, but we know he is no longer suffering and is in a better place. His sweet smile will forever live on in our hearts. Gentle Jesus meek and mild Please look after our little child. He was born with love and so It is with love we let him go. Email Skyler's family at