Most of you know Korben. He is the sweetest little guy with the prettiest hair. He is a smart out going funny 2yr old. He loves playing outside and giving hugs.He actually turned 3 may 16. Even on his worse day he smiles and laughs. When Korben was just 4 months he stopped breathing at daycare and was unresponsive and rushed to the hospital then airlifted to children hospital. After being there for 8 weeks we finally got news  was diagnosed with Beckwith-Wiedemann syndrome, Uncontrollable Congenital hyperinsulinism (CHI) 2 very rare condition. Korben has been fighting for his life since he was 2 months old. He has been in a hospital bed more than his own bed. Korben’s first admission to Children Hospital of Philadelphia was in June of 2022. They ran test after test after test. We were there for a while. They adjusted his medication, put a feeding tube in and did genetic testing. We thought we had gotten the answers we need. We were wrong korben sugars have become unstable again and it’s sending him into hypoglycemic shock, which is very dangerous. Korben is being admitted to Children Hospital of Philadelphia again. His appointment was set for May 16, however we just found out on may 14 that he has to be medically cleared before we can travel. They have rescheduled his admission to August 21. They believe he may have tumor on his pancreas we won’t know for sure till they do the pet-scan.CHOP is the only children hospital that’s has the equipment to do it . He has gotten to the point where he won’t eat he will go days and days without eating anything by mouth just his feeds. On top of that he also suffers from severe neutropenia and can’t find off infections not even a normal cold. His endocrinologist has done a great job about being completely honest with us about everything. She told us there is 87% mortality rate by the age of 6 in children with uncontrollable CHI  We are asking for help to cover medical expenses as his insurance will not cover his admission because it is out of state and also to help with travel expenses to get Korben to and from Philadelphia. As we will be going from 2 incomes down to 1 income for an uncertain period of time.If you can’t donate please share with friends and family. Our baby boy needs this! Every little be helps!! We also have shirts for sale to help support korben. #korbenstrong