Charlie was born on March 17, 2013 in Arlington Heights, IL. Being born on St. Patrick’s Day means you’re lucky, right? We thought so. Five months before getting pregnant with Charlie, we had a miscarriage and were convinced when we knew Charlie was coming, that God had a big purpose for his life. We were right… we just didn’t know it yet. Charlie was one in a million.
At seven-weeks-old, Charlie got a cold. One evening, his breathing got so labored that we took him to the ER. They admitted us for observation. The next day, he went into respiratory arrest and several nurses worked hard to save him. He was intubated and we were sent by ambulance to Lurie Children’s Hospital in downtown Chicago. There, we found out that Charlie had the Human Metapneumovirus. It acts similarly to RSV and is very aggressive. He was in the PICU for ten days until he recovered and we all went home thankful.
In August of 2014, we moved back to our hometown of Tulsa, OK to be a part of a great ministry and to be closer to extended family. One of the things we were looking forward to was getting “fresh eyes” on Charlie. For the first year and a half of his life, he was in and out of the doctors office with ear infections, colds, viruses, etc. and he was starting to become uninterested in food . Our new pediatrician took one look at him and knew something wasn’t right. We began a series of tests with a neurologist and started seeing a physical therapist because Charlie wasn’t walking yet, like other kids his own age.
Charlie continued to struggle eating and was losing weight rapidly. Together with our doctors, we decided that he needed a feeding tube in his stomach to help him stay healthy and grow. So on December 8th, 2014 we went in for surgery. However, when the surgeon came to examine him, he had a fever and slight cough. Charlie was admitted to the hospital and we found out that he had three viruses, was extremely anemic and his electrolytes were dangerously low. What we thought would be a one-week stay turned into six. Doctors tried to figure out what was going on by running every test under the sun. His IgG antibodies were low but they weren’t sure why. They told us that many of the blood tests were coming back normal and that whatever was going on with Charlie wasn’t “textbook.” He had three blood transfusions and three IVIG infusions and finally was strong enough to have his surgery. Once the surgery was complete we were able to come home. The doctors said that Charlie would need to have monthly IVIG infusions to keep his immune system healthy. The doctors wondered if the immune struggles he had were due to the lack of nutrition. They asked that we follow-up with the immunology clinic at
Arkansas Children’s Hospital.
We were three months post our long hospital stay, Charlie had gained over 7 pounds and was acting like a normal, crazy toddler. He still wasn’t eating by mouth but thanks to his monthly IVIG infusions, he hadn’t been sick once. This is something we had never experienced with him and it seemed as though he was going to be fine. On April 6th, 2015 we had our follow-up in Little Rock and we bounced into the appointment thinking the doctor would confirm how great Charlie was doing and that this whole episode was just a bump in the road. When the doctor came in he began to explain that Charlie was at risk of having a rare autoimmune disease. When we asked him how confident he was, he said, “50/50.” So they drew some blood and said it should be back in a few weeks. We went home nervous and praying for the best. It only took 48 hours and we heard back from the doctor in Arkansas. We were shocked to hear so soon. Charlie’s blood test confirmed that he had Hyper-IgM. This disease is so rare that it affects one in a million boys and the only chance at a cure is a bone marrow transplant. And so our journey begins...