24 Jan Christin Siscoe
Aldis Hodge was recently quoted as saying, “What makes a superhero? They’re supposed to represent hope, opportunity, and strength for everybody.” As a mom, I find this statement a true reflection on my Cooper and every UDN participant. Our journey began shortly after Cooper was born.
Cooper was a miracle baby in the beginning. After years of fertility treatments, we decided to adopt through foster care. In May 2011, we had our first foster child, Cooper’s adopted brother, Ayden in our arms. By surprise, on April Fool’s Day 2012, we found out we were pregnant. Here is where Cooper’s story begins.
Cooper was born 6 weeks prematurely and had a short NICU stay. He was a rather large 34 weeker at almost 8 pounds. His NICU stay was uncomplicated and we went home to enjoy our completed family. Cooper met his milestones, yet, he still showed GI concerns, swallowing concerns, rashes, and always was hot to the touch. He battled many infections as a baby and even though there were signs, I was reassured by the medical team that Cooper was just trying to catch up from being premature.
Then, the fevers started. Fevers into the 106s. Once again, we visited a specialist and were reassured that Cooper was fighting infections. One day, my sitter called me to inform me that my son had “knots” on his neck. I rushed him back to the pediatrician and we were sent to Infectious Disease and Ears, Nose, and Throat specialists. We biopsied the nodes, only to find nothing. At this point, his medical team saw some changes in his immunoglobulin labs and he was neutropenic. Still, no diagnosis was found.
As he grew he became weak and lethargic with his fever flairs. The local hospital’s complex care team took on his case. Once again, no findings. But, then, they mentioned the Undiagnosed Disease Network and felt with my collaboration, we could hope for Cooper to be accepted. I will never forget the day that I received his acceptance email. I felt hope again. We visited the DUKE location and he actually had a “flair” during the testing week. I was confident that this would lead to a diagnosis.
As we wrapped our visit up and returned home, I received a call that Cooper needed to go to the nearest emergency room because he was in pancreatitis. As Cooper’s usual happy self, we entered the emergency room and were admitted. But, no one knew why he was now in pancreatitis. So now, we just added this to his list of medical conditions. As I write this today, we are still without a diagnosis and genetic screening was negative for gene abnormalities. So we wait. Like many of you, we are in unknown territory and we strive to keep a normal environment for our family.
So why entitle this Super Cooper? As Cooper underwent speech therapy, they finally succeeded with him pronouncing his name. Yet, when asked by his therapist what his name was, he responded “I am Super Coop.” In awe, my heart exploded. This child had been through more than many adults will ever endure and he does every lab, test, or surgery with a smile. As we await the day we know why, we continue to treat his symptoms, and let him live his life as Super Coop.
As many of you continue to battle this journey along with us, remember the definition of a superhero. As participants of the UDN, you give us hope amongst a fog of darkness, your strength lights the way and empowers us to continue to fight, and you provide the opportunity for others to heal, learn, and develop medical diagnoses. You are all our HEROS.