My name is Orlando Lorie; I am a fellow airline pilot and also a Naval Reservist. I want to share a very personal story with my pilot-family in hopes that you will be moved to join the journey on which my family finds itself.
In April of 2013, the lives of my wife and I were changed forever when we received a diagnosis for our son, at that time a 2-year-old. Andrew has DIPG (Difused Intrinsic Pontene Glioma), a brain tumor located inside the brainstem that is completely inoperable with a mortality rate of 99 percent.
Never in our wildest nightmares were we prepared for the journey upon which we were about to embark. Within four days Andrew was completely paralyzed on the left side, had lost all trunk control, couldn’t sit or stand on his own, and seemed to be disappearing into himself, not even smiling anymore. It’s hard to hear someone give your 2-year-old an expiration date when their life had only barely begun. It’s especially hard to function knowing that your entire world is about to change with no control over any of it.
At the time of Andrew’s diagnosis the only treatment option was radiation. Andrew underwent 30 sessions of radiation followed by chemotherapy. The first MRI, following the initial radiation, revealed that the tumor was significantly smaller. To everyone’s surprise, Andrew made a complete clinical recovery. We did two years of intense physical and occupational therapy and Andrew regained all the functionality he had lost attributed to the severe nerve damage caused by the tumor. Andrew lived two lives; his hospital life where he would go and see the doctors, and he had his home life with sports, activities, and school. The six weeks they had given us at the time of the diagnosis turned into four years with a healthy little boy who enjoys playing baseball, lacrosse, riding his bicycle and so much more – all things we feared we’d never experience with him.
In December 2016, during a routine MRI, we learned that Andrew’s tumor had grown. Given how positively he had responded to the radiation the first time, the decision was made to re-radiate him. Once again he responded wonderfully and the post-radiation MRI revealed that one of the two new spots was gone and the other was smaller. Unfortunately, the second MRI in June 2017 revealed additional growth in that second spot that hadn’t been eliminated with radiation.
Due in no small part to excessive government regulations, the U.S. is significantly behind the power curve in the treatment of DIPG. With no other treatment options available in the U.S., we headed to Monterrey, Mexico where a clinic has taken a new approach to reaching the tumor site through Inter-Arterial Chemo and has seen measurable success with the current DIPG kids they are treating.
Unfortunately, because this treatment is outside the U.S., none of Andrew’s treatments are covered by health insurance and the cost will exceed $250,000 for medical expenses alone. We are asking for your financial support, no matter how large or small, to help us get our son the treatment he needs to fight this. Please help join our fight and enlist in Andrews Army.
You can help by donating via: gofundme.com/fynaz-saving-andrew
