Gavin is 14 years old and has been suffering from Chronic Pancreatitis since he was 8 years old. His first flare up was in Disney World right before he was ready to step onto his first ride. He dropped down to the floor in excruciating pain and was severely sick. We flew home to Philadelphia and took him straight to CHOP. It is there they diagnosed him with Pancreatitis. We never have heard of a child with this and it was new for the doctors as well. 
After months of test and genetic testing it was discovered that Gavin has two genetic mutations that contribute to his condition. He is a CF carrier in which causes him to have a CFTR mutation and he also has a Sphinx 1 mutation. It is not known where the Sphinx 1 comes from. His pancreas also does not flow normally. Instead of it being somewhat straight with a nice even flow, his flows like a crazy, windy river. It almost looks twisted. This causes build up in which he develops stones that block his pancreas. 
He has been hospitalized over ten times now with the last recent  stay being two weeks long. He had three procedures done during his stay. The one procedure they did an ERCP which is an enhanced endoscopy where they went in, found stones in his pancreas, ballooned it open, removed all the stones and then placed a stent in his pancreas to keep the flow going. The stents are only a short term fix. Gavin’s pancreas is becoming more and more damaged with each flare up. His genetic mutations and his chronic pancreatitis also put him at a very high risk of diabetes, renal failure and especially pancreatic cancer. 
There are two surgical options for him right now in which one would be to remove his pancreas, transplant his Islet cells and then put the healthy part of his pancreas with the new cells back. He will be insulin dependent but it will hopefully give him relief from his pain and a better quality of life. 
We live in Levittown Pennsylvania and for this surgery he will have to go to the Children’s Hospital in Minneapolis Minnesota. Our insurance which has been awesome through this whole process over the last 6 years will not cover the entire bill being that it is out of network. That part we are working on still. What we need help with? We have to travel from Philadelphia to Minnesota.  We will be there for at least three weeks depending on recovery and rejection possibilities. Dad and I will both be out of work for this. Normally dad would work overtime to come up with any and all of what we need but with Covid 19 overtime has not been available for 4 months and does not look hopeful for it to be anytime soon. 
We don’t have an exact date of when this will happen but we were told to start preparing as it can be scheduled anytime depending on how much more damage the pancreas has and we will need to be ready. 
Whatever help anyone can give us always appreciated. We want Gavin to be his happy healthy self. The poor kid has not been himself for over a month now and he actually begged the doctor to do surgery as soon as possible so he can stop the pain. 
Gavin is the most loving boy and deserves to have the best life possible.