Three years ago, when I was asked to choose one wish, any wish, I asked to be given the opportunity to start a center for childhood pancreatitis. A haven right here in San Antonio for hurting kids like me all around the world to receive proper care and medical treatment, as well as both emotional and financial support. I want these children to be given a hope, a reason to keep fighting, and relief from their suffering.

There is so little research on pediatric pancreatitis that children who suffer from it typically have no place to go, no place to receive treatment, and no hope for the future. They are uprooted from their homes and are shifted from state to state looking for unknown answers. Some are even given up on, and are sent home to die. For these children, this disease has resulted in many long years of pain and suffering with no relief.

Going through this myself, I always wondered why others would live a normal life, while I would stay for months on end in the same hospital room, too weak to even lift my head and receive visitors. The pain was unbearable, it’s something that no one can even imagine without having gone through it themselves. And for a child, with your whole life ahead of you, to be told you have to spend however little of it you have remaining in this kind of pain, unable to see friends or even go to school for an hour, is cruel.

A couple years after I myself was diagnosed, my parents and I started to receive phone calls and messages at all hours of the nights from the families of sick children. They wanted answers, they wanted to know how to get their child out of pain, and how to save their life. One by one, we would transport them here to San Antonio to undergo surgical operations and slowly, they would be able to get back to a semi-normal life. They would be given a chance to live a life outside of the hospital, even if they had to stay on home health care.

But after having your life slip right out of your hands, being given a small portion of it back is a blessing, and I got to see this blessing happen in the lives of these kids. After seeing all this, I decided one day I was going to change the face of childhood pancreatitis. There was no need for this suffering, and I was going to do something about it. I was placed in my situation for a reason, and even though it meant excruciating pain on my end, I wouldn’t trade the life I have now for the world. I can use my life to be a hope to other children, to show that you can get through this, and that you can learn to live no matter where your new “home” may become, whether it’s a hospital across the country, or on a home health care system at the Ronald McDonald House.

But these children don’t know that they have options. With every attack of severe pancreatitis, you have up to a 16% chance of death. For a child with chronic pancreatitis, you can have multiple attacks a year, increasing your risk as your pancreas becomes weaker and weaker under the stress. Unlike an adult, a child’s organs are still growing and forming, and permanent damage due to this can be lifelong with no reversal. Doctors don’t realize this. I myself have had many nurses and doctors who didn’t understand tell me I was making up my pain, and everything would be all right if I stopped pretending. It’s not their fault, they haven’t been trained in this, but it’s not fair to the kids. They feel like everything becomes their fault and that there is nothing they can do to stop it. They try, but they can’t stop getting sick and having to come back to the same hospitals with the same doctors who just don’t understand.

And that’s our problem.

We need to be able to reach out to hospitals and medical teams all over the world to show them how to treat and take care of these children, to show them that they have an option and a place to go for help. And above all, to love the kids. Show them they are not alone in this fight, that there are people here who really can understand them, and that we have treatment options so they can live life to their fullest, so they can be for once a normal kid, which is all they want. To be well enough to get dressed, a blessing many people take for granted, to be able to put on blue jeans and run around and play with a pet, to be able to sit for classes in school without falling further and further behind from the rest of the grade, to be able to eat a bite of food without spending the rest of the night unable to move from the pain. These are all things we take for granted, but things that are taken away from these kids.

Most importantly, we need a cure. While the transplant saves lives, it just buys time until someone can invent the next big treatment option. It’s not a cure, it’s a tradeoff from one set of issues for the next. Instead of now pancreatitis, you have to constantly worry about how much longer you have before all of your cells die. You can’t take a single bite of food without taking medicine, and you can’t get a fever without being checked into the hospital.

I want pancreatitis to be a textbook disease, something you can look at and know immediately how to get rid of it once and for all. There is no reason to let this disease dominate the lives of so many children.

I never want children to feel excruciating pancreatitis pain ever again.

And that is what Rebecca’s Wish is going to accomplish. That is what we are going to accomplish together, and we will change the lives of thousands of kids worldwide. From the child sitting in a hospital in India to the kid sitting in the neighborhood across the street, pancreatitis will no longer have a hold on our lives.

– Rebecca Elizabeth Taylor