Anielas pancreatic journey

On the outside Aniela, who is known by most of her friends and teachers as Nelly, is a happy healthy 16 year old. Her genetics have said differently. When aniela was born she was very healthy, she was about 6 weeks early. She came right home. The problems started at around 3 months old. She would get stomach flu issues, for a week every few months she would be very sick. The doctor always said it was a tummy virus. This would happen every few months until January 2016, It started on her 15th birthday.  She was vomiting uncontrollably and in a massive amount of pain. We let her sleep and puke for a few days before we went to the doctor. Because we had been through this so many times they always said it was a tummy virus. This had been by far the worst flare up. When we went in they said to let her rest for a few days. It took about a 2 weeks before she would feel better. After that, all was quiet for 9 months. This would be the longest time she would not have any issues. fast forward to October of 2016 she would be hospitalized for the first time, for Pancreatitis. They did numerous blood tests, MRIś, and genetic testing.  They came to the conclusion that her past tummy issue, were actually pancreatitis flare ups. We wanted to know why this kept happening. The doctors had just as many questions as we did.  Pancreatitis as bad as she had it for no real reason was not normal. When they came back with answers we were told that she has 2 genetic mutations, all attacking, causing her pancreas to not work properly.  Her final diagnosis is Chronic hereditary Pancreatitis. She went home after a week in the hospital.  She went back to swimming everyday.  Shes  a varsity swimmer for HUHS. She pushed herself hard and did well. She had another flare up toward the end of November and again in January. She was taken by ambulance to childrens with uncontrollable pain and nausia.  She has a great GI, Dr. Werlin. He has a been a great help.  He put in a request for a surgery that he believes will help her.  The surgery is Pediatric Total Pancreatectomy and Auto Islet Transplant.  It is a 13 hours surgery that will take her chances of pancreatic cancer away, and no more pancreatitis. During the surgery they remove the pancreas, they take the healthy islet cells will be injected into the liver and the liver will eventually work as the pancreas. The gall bladder spleen and appendix are taken out as well.  After the surgery she will not have the chronic pain from pancreatitis. She will be insulin dependant for a little while.  Aniela has been brave and strong. She has always fought through the constant pain, she swam through and now she is pole vaulting through it.  I could not be prouder of the way she conducts herself. We will meet with the team in Minnesota a part if the mayo clinic, in June to get her evaluations done for this surgery.  During the summer she may also be in some studies through her GI, We just hope whatever they learn about this disease through Anielas testing can help someone else. Thank You for all of your thoughts and prayers.