Since the day Charlie was born, he has suffered from chronic abdominal pain. The first six months of his life he cried around the clock. He struggled to gain weight and his severe reflux caused constant ear/sinus infections. It was assumed that these issues were all related to a milk intolerance as his older brother has multiple, life-threatening food allergies. As he got a little older, things became more stable, however, he always remained a poor sleeper and frequently complained of stomach pain. In June 2013, at the age of 3, Charlie was first hospitalized for severe abdominal pain and vomiting. After a second hospitalization in January 2014, it was discovered that Charlie suffered from chronic pancreatitis. Due to the rareness of this disease in children, local doctors began running multiple tests to determine a cause. After a few months of no answers and continued pain, Charlie was sent to the Mayo Clinic in Rochester, MN. There Charlie underwent his first ERCP (endoscopic retrograde cholangiopancreatography), a procedure that combines an upper endoscopy and x-ray to treat problems in the bile and pancreatic duct. At that time it was discovered that Charlie had pancreatic divisum, a birth defect in which parts of the pancreas fail to join together, causing the pancreatic duct to drain differently. During the ERCP, the surgeon made an incision in Charlie’s pancreatic duct to allow it to drain better and also placed a stent in the duct to help keep it open. It was our hope, that stent therapy would be the answer to Charlie’s problems.

 

Unfortunately stent therapy only worsened Charlie’s condition. After 5 high-risk endoscopic procedures and stent placements, 9 weeks on high dose steroids, placement of a NJ feeding tube, various medication attempts and multiple hospital stays, the specialists at the Mayo Clinic had exhausted all of their options and Charlie’s pancreas was continuing to deteriorate rapidly. Charlie was then sent to the University of Minnesota for one last treatment option, a Total Pancreatectomy and Islet Auto Transplant.

 

On August 29th, 2014, Charlie underwent this 12 hour transplant surgery in which doctors removed his pancreas, spleen, gall-bladder and duodenum. His insulin producing islet cells were then harvested from his pancreas and transplanted back into the portal vein of his liver, in hopes that he will not require insulin for the rest of his life. Charlie is the 2nd youngest patient in the world to undergo this surgery.

 

Last year alone, Charlie spent over 70 days in the hospital, spent almost 2 weeks in the ICU, relied on daily narcotic pain medication, went to the operating room more than 13 times, was flown via air-ambulance from Omaha to Rochester once and went 6 months with almost nothing to eat or drink orally. Today, just 7 months post transplant, Charlie is no longer on any scheduled pain medications, is sleeping all night for the first time in his life, is able to eat and drink most anything he wants, no longer has his feeding tube, and as of recently is not requiring any insulin use. He is living proof that miracles do happen!

 

Charlie is a hero in our eyes, but to him there are far greater heroes. He has always had a love for firefighters and rescue workers, and dreams of one day becoming one. When he was selected by Make A Wish to have a wish granted, he without a doubt wanted to go to a fire station. Out of all the fire stations he could think of to go to, he chose Mickey Mouse’s fire station.  Although he is aware that this is just a local Florida fire department and Mickey will not be there, all he cares about is seeing the Fire Station and Firefighters that take care of Magic Kingdom and all of the other Disney properties. If you know Charlie at all, the uniqueness of his wish will come as no surprise. What others may view as ordinary, Charlie sees as extraordinary.

 

Charlie’s Dad, Roger Ray, is a Truck Center Companies employee.  He allowed us to share his son’s story which was featured at Make-A-Wish Nebraska’s Blue Jean Ball fundraiser on March 28th in Omaha. That event, hosted by Friends of the Make-A-Wish Council, raised $300,510., or enough to grant 40 more Wishes to Nebraska kids with life threatening medical conditions.  Truck Center Companies is working on its 21st annual golf benefit to support Nebraska's Wish kids, raising more than $1,700,000 to-date, thanks to the generous support of our customers, business partners and staff.  Thank you, all, who support the Make-A-Wish Foundation of Nebraska!