Gastroparesis is a condition that affects the normal movement of the muscles in your stomach. Food cannot be digested or moved out of the stomach into the digestive system. This causes constant nausea and vomiting. Unfortunately, there is no cure for gastroparesis, and management of symptoms is currently the only hope. She was receiving care at the best hospital in Philadelphia, The Hospital of the University of Pennsylvania, but unfortunately has not responded to any of the different treatment options offered by her treatment team.
She has not been able to eat since the onset of her disease and is being sustained nutrionally by an intravenous feeding system. This disease leaves her physically weak, unable to work or enjoy the little things in life we often take for granted. We have put everything else on hold to support her and care for her while she fights this debilitating disease that has taken over her life.
What is Gastroparesis
My main goal is to give Katy every treatment option available. We are willing to try anything at this stage if it offers her any hope of getting her life back. This includes traveling to a different state for a clinical trial or having her seen at a different institution. Johns Hopkins in Maryland is working on some new treatments and a possible cure. Johns Hopkins does not accept Medicaid so all treatments have to be paid in cash.
I also want to increase awareness of this disease that Gastroparesis affects 5 million Americans and most people aren’t aware. This is a serious disease and it can have devastating effects.
Lastly we would like to pay forward the help that she receives. Through a support group I have learned there are lots of people that don’t have a support system for little things in their care. They may not have a ride to an appointment, may not be able to afford meds and need an advocate to represent them.
On a larger scale I would like to start a Foundation for Gastroparesis. I am grateful that my daughter has family, friends and my wife and I for support. No one can do this alone.
I appreciate anything that you may be able to give. A little now may be big for the future.
God Bless all of you.