Ijah is a beautiful four-year old boy from who suffers from a rare mutation of his catatonic trypsinogen gene which caused him three years of debilitating pain, nausea, vomiting and motility issues due to hereditary pancreatitis.
Ijah was unable to focus mentally. He couldn’t learn. He was malnourished, in constant pain and suffering from nausea from morning til night. Because of his delays he was classified on the autism spectrum. He also suffers from severe food phobias and is afraid that eating anything outside of his normal diet will cause him pain.
For three months, June through August 2013 Ijah was unable to eat anything by mouth and instead had to be fed pre-digested formula through a tube in his stomach. For a short period of time he had to also endure Total Parenteral Nutrition (TPN) where he was fed a fat/protein solution through an IV in his arm.
The PRSS1 mutation that he, his sister Aleksys and his father and grandmother carry causes the pancreas to literally digest itself. Pancreatitis has always been known as an alcoholics disease, but through caring physicians and the Foundation for Childhood Pancreatitis, the world is beginning to learn that Pancreatitis can and does affect children and adults through mutated genes.
However, for a select few like Ijah there are solutions. On August 26, 2013 Ijah became the youngest known child in the world to undergo a Total Pancreatectomy & Auto Islet Cell Transplant (TP/AIT). Surgeons in Minnesota removed Ijah’s pancreas, spleen, gallbladder, duodenum and appendix and then harvested his insulin-producing cells (islet cells) from his pancreas and put them into his liver.
Eight months post-op Ijah is finally free of insulin and is beginning to try new foods and leave his food phobias behind him. Even as I update this page I handed him a fried pork rind (not the healthiest choice I know, but I was crushing them to use in our Paleo Meatloaf) and without much hesitation he ate one and then another. Ijah is also free of most medications and besides his improved health and weight gain, the biggest change in our little superhero is his new found love for learning. He can finally focus, learn, read, talk and play like a normal four year old little boy. This a pre-transplant photo. You can SEE the sadness in his face. Below that is his first ever school photo. He truly is a happier boy. Don’t get me wrong, we still have challenges. His primary diet is still pre-digested formula and he still has severe motility issues. He doesn’t sleep well and most nights he is up several times and very restless, but the challenges he now faces do not include the severe suffering of pain or nausea. He is a fighter and he KNOWS God loves him.
We hope you will share this journey with Ijah and his family as they celebrate his life, old and new… free of pain! To make a donation in honor of Ijah and for children like him, please visit the Foundation for Childhood Pancreatitis and #GiveHOPE a chance.
Ijah, Mommy, Daddy and Aleksys