The holidays bring about the end of one phase in our life and turns the key on new phase, one that we hope will bring positive change in our family, our health and our ability to give back to the community and world we live in.
This disease is like poison. It has drawn nearly every ounce of blood it could from our son and yet it seeks more. While we are thankful beyond measure for the healing of Ijah and is continued growth and language, we fear for the future. Tim will be seeing a new physician in hopes of getting a biopsy done to test for cancer and in the past year his mother has lost over 90 pounds due to digestive issues she has attributed to her MS.
The past week however, she ate little more than 3 cups of food and has continued abdominal pain, nausea and other symptoms that are evident in someone who is suffering from severe chronic pancreatitis. Our hope, our prayer is that as she is seen in the emergency room tonight the results do not include a diagnosis of pancreatic cancer.
Because of the damage and grief pancreatitis and it’s founder, the dreaded PRSS1 gene have brought to our family we have found greater desire to give back to those who not only have helped us through our trials but to reach out to those who will have to experience this life for themselves.
In February of this year I set out to find other parents and supporters that could help me deal with all that was going on in my family due to Ijah’s pancreatitis. That effort brought about a the Foundation for Childhood Pancreatitis. Founded by our family, we have been able to reach out to 160 families who have suffered through pancreatitis and the loss of loved one who succumbed to pancreatic cancer.
The Foundation for Childhood Pancreatitis aims to provide compassionate support to families and children with pancreatitis and to raise awareness in the medical community in an effort to change how the disease is diagnosed and treated. Ijah’s primary gastroenterologist, Matthew Giefer, M.D. and his surgeon Srinath Chinnakotla, M.D. have joined our efforts as Executive Directors and we are currently in discussions with Aliye Uc, M.D. from the University of Iowa to bring awareness through the Inspire Study.
Persons with pancreatitis have an increased risk of pancreatic cancer and individuals with a genetic disposition to pancreatic cancer due to one for the main hereditary mutations are at an even greater risk. Currently, Pancreatic cancer is the fourth leading cause of cancer death in the United States, but it could move up to the second as early as 2015, according to a new report from the Pancreatic Cancer Action Network. With those numbers, kids with a predisposition of either or both diseases are faced with the possibility of either having cancer as an adult or like Ijah, losing not only their pancreas but several other organs in an attempt to avoid the deadly cancer that kills 95% of all those who have it.
We ask that you join us in giving thanks this year as we move into a year of giving all that we have for the future of children with pancreatitis. Join us today on this #GiveTuesday by donating to the Foundation for Childhood Pancreatitis. No amount is to small and every little bit helps to #GiveHOPE.
Sheila R. Williamson
Founder of Childhood Pancreatitis and Mommy to Ijah & Aleksys, Cranky Panky Fighters!