Pancreatitis Stories | Pediatric Pancreatitis

Rebecca's Wish feels it's important to share the stories of children with this awful disease so that we can grow awareness and find a cure for pediatric pancreatitis.

Aaliyah Lopez

Aaliyah is 14 years old. She is from Converse, Texas.

Aaliyah was diagnosed with pediatric pancreatitis at the age of 8. Prior to the sudden change in her health, she was an athlete full of energy. She enjoyed playing basketball, softball, and soccer. With the frequency of her pancreatitis and the pain she suffered, Aaliyah was no longer allowed to play sports, not because she didn’t want to, but because her body would not allow her to. Aaliyah had to be homeschooled at one point because she just could not keep up, and we had to keep the pain under control, so it was in her best interest to stay home and safe. Aaliyah is now stented every 12 weeks as a preventative measure to control the frequency of attacks with no cure. It is so important to find a cure for pediatric pancreatitis, so that our children do not have to suffer with unbearable pain. So that they can move forward in life without pain. Aaliyah has always said, 'No one understands the pain I feel inside, but it doesn’t go away…maybe one day!' - Aaliyah’s mother, Monica Lopez

Ayla and Joss Cortez

Ayla is 12 years old. Joss is 10 years old. They are from Corpus Christi, Texas.

“Ayla and Joss were diagnosed with chronic pancreatitis - Ayla at the age of 7 and Joss at 5. This diagnosis was very difficult for our daughters and for our family. Their pediatrician, specialists and even the emergency room, repeatedly blew off the severity of what was going on with their bodies. One doctor even accused me of ‘feeding my skinny little children too much fast food!’ We ended up having to go out of town to find a doctor who finally took it seriously, which was life changing, especially after we discovered that my youngest child, Joss, had the same issues as Ayla. Although they are now asymptomatic, their pancreases are under constant attack and are already 20% damaged. Every day, they have to closely monitor their fat intake, and they take medication with every meal. Although their health situation is very challenging at times, we just praise God that there is a treatment and that the girls are thriving! Ayla is a beautiful dancer with dreams of becoming a professional ballerina. Joss is a talented thespian who aspires to be a graphic designer. They continue to pray for answers and eventually a cure, but are grateful for Rebecca’s Wish as well as the doctors who provide them with such excellent care!" - Ayla & Joss’ Mother, Oakley Cortez

Okilani Esquivel

Okilani is 17 years old. She is from Brownsville, Texas.

Three years ago, I got very sick and doctors couldn’t figure out what was wrong with me. I went from hospital to hospital until my gallbladder was removed and then my life changed drastically when I continued to feel very ill and doctors in my hometown couldn’t figure out what was wrong with me. I had to be referred to Driscoll Hospital in Corpus Christi and later to San Antonio where I was fortunate to meet a wonderful doctor named Doctor Patel, who is helping me with my condition. I was unaware of my condition until I started doing research. I was in constant pain for a very long time and I was unaware of what I had, until with the help of Dr Patel, I was able to learn more about my illness and how to manage it.

I have been living with pancreatitis for the past three years, and I take medication on an every day basis with every meal. It gets frustrating and tiring at times, but it is what I have to live with.

I am so grateful I met Rebecca and her wonderful foundation, Rebecca’s Wish. Thanks to Rebecca I have been able to learn so much. She has been so helpful in teaching me the healthy ways I should eat and I have been able to ask her for advice in times of need or questions regarding our condition. My wish is to make more people aware of this condition. It took me a long time to really know what I had and for doctors to pinpoint what I had, but I was lucky enough to find wonderful doctors, nurses , family and friends that have helped me and have been there for me in the hardest moments of my life.

I wish more and more people would get involved so that we can find a cure to this illness that has no cure at this time. I drive to San Antonio every time I need to see my doctor or when I feel ill. It’s a long drive, but it is worth the trip. I just hope and pray that we can get the word out to educate more people so that this illness will not beat us. There are many children battling this illness and we need to continue to do more research in order to beat pancreatitis. I am just one of many, but together, I believe we can all make a difference. - Okilani Esquivel

Hannah Martinez

Hannah is 16 years old. She is from San Antonio, Texas.

"In all my years as a mother to four children, I have never encountered a more heart wrenching and serious situation as I did in October of 2018 when Hannah’s first pancreatitis attack presented. Never. When you know with certainty something is wrong with your child, very wrong, it is terrifying. I had the expectation as she was rushed by ambulance into the emergency room, full of medical professionals, that she would quickly be comforted, and answers would be quickly known. They weren’t – and this only escalated the terror. Hers, and mine. What do you do when you see your child suffering beyond any suffering you’ve ever seen or known? Let me be very clear about this: PAIN SO SEVERE YOUR CHILD IS BEGGING TO BE PUT TO SLEEP between bouts of vomiting and the deepest moans of agony. Pain no child should EVER know. Pain that you, as a parent, can literally do nothing about but watch? Then, what do you do only to be told that there is very little that can be done to help them? And that there are very few doctors and extremely limited resources? That so much about this disease, this incurable disease, is really not well understood at all? Where do you go for help when you thought the hospital was the last line of defense and THE place for it?

Before meeting Dr. Patel through the work of Rebecca’s Wish, we were plagued with 'I don’t know’s' and diagnostic uncertainties. We discovered, unfortunately, over the course of the last year and a half that Hannah has several autoimmune diseases; however, the extent of her chronic pancreatitis, the damage to it, the impact and prognosis for her future with it, were all at a complete loss to us. We knew nothing but her pain was very real, and frequent. The VITAL work that Rebecca’s Wish has done has made a tremendous difference for Hannah. If not for the research they’ve conducted, the training and recruiting of medical professionals and equipment so desperately needed for our children, we would be lost and floating dangerously in a black sea of hopelessness and ignorance. And that is terrifying. Thankfully, with Rebecca’s Wish intervention we at least now have answers. And these answers, while they are terribly hard ones to hear, allow Hannah understanding and the ability to create plans and strategies for her life, in spite of it all, with Dr. Patel’s help. And for us as her family to understand, support, and encourage her through it.

I could not be more grateful or indebted to the work of Rebecca’s Wish in literally saving us from darkness, giving us a community for comfort and sharing, and more than anything, relentlessly pursuing BETTER. Better treatments, better education, better access to specialized doctors, and ultimately – hope for a better life ahead, with a cure."

- Jeanette Robinson, Mother of Hannah Martinez

Kaylie Carter

Kaylie is 17 years old. She is from Smithville, Arkansas.

"She hated being "the sick kid" at school. She was too sick to go to school most days. When she was there, everyone (because they cared about her) would ask how she was feeling, etc. She longed to be a "normal" kid. She felt excluded from all of the fun things her friends were getting to experience. The kids tried to stay in touch for a while, but out of sight...out of mind. They were kids, and we understand.

On the medical side, we seem to have tried so much! No matter what test her doctors did or procedures they tried, she remained in constant excruciating pain. Although we were blessed with WONDERFUL doctors (Dr. Fuchs at Arkansas Children's GI Clinic, Dr. Patel, and the entire transplant team in MN), it was a very long road to recovery.

It has been quite a struggle finding a doctor post TP/IAT. The doctor she had seen throughout her entire life had moved to the East Coast about a year following her transplant.

I could ramble on and on, but I know you are aware of the struggles these babies go through.

God has blessed us tremendously through all of this. We have the best family and friends, a wonderful church family, and a very special bond with others we have met along the way who were going through the same situation. For all of these things, we are thankful.

Kaylie has said many times, 'That (pancreatitis journey) is part of what made me who I am. If I hadn't gone through all of that, I would be a totally different person. As hard as all of it was, I wouldn't change a thing.' That is hard for me to rationalize...she is a much stronger young lady than I will ever be!❤" - Tammy Carter, Mother of Kaylie

Alyssa Hanshew

Alyssa is 17 years old. She is from Fayetteville, Arkansas.

"There really aren’t words for the frustration and anger that accompanies having to continually educate hospital personnel on childhood pancreatitis and the attacks that accompany the disease. Before her TPAIT, Alyssa was in and out of hospitals over 70 times with chronic pancreatitis or stent procedures. Hospitalizations became a way of life and everyone in the family lived on autopilot. Alyssa is 17 now and still insulin-free. However, she still suffers daily with GI issues and chronic pain. Additionally, when there is a concern, there isn’t guidance readily available. While we have most definitely witnessed progressed over the last 17 years, we are still subject to scouring the internet and posting questions to blogs that are mostly applicable to adults. Rebecca’s Wish will help provide the resources to enhance the quality of life for all of those impacted by childhood pancreatitis."

- Mother of Alyssa Hanshew

Ace Bowling

Ace is 10 years old. He is from Many, Louisiana.

When Ace was asked to explain what it feels like to have pancreatitis he responded, "It feels like my stomach has been burned by something hot, but the burning is on the inside of my belly. It's just so hard to explain because the pain is just so bad, like the worst in the world!" Finding help with Dr. Patel and his team in San Antonio has been a gift from God. Prior to seeing Dr. Patel, Ace was seen by multiple doctors and hospitals, but his condition only continued to worsen. Dr. Patel was the first doctor who provided more than just pain management and testing. He was able provide treatment for Ace through ERCP and stenting. Ace was out of the hospital prior to treatment and having a pancreatic flare-up nearly every month. He is now 9-months flare free! When Ace was asked what it meant to him to find help he responded, "I feel like it saved my life. It hurt so much before, but now it doesn't, and I can play sports."

Austin Clements

Austin is 19 years old. He is from Little Rock, Arkansas.

"Having pancreatitis for several years was definitely a defining experience in my life. I remember slowly becoming less involved in the lives of my friends, because of all of the hospital stays and doctors visits, not to mention the pain I was in nearly all of the time. When I would have the energy to want to do something or go somewhere, it would quickly dissipate and leave me exhausted and in pain. I didn’t believe that I would ever recover and I thought that would be the only way I could live my life from that point forward." -Austin Clements

“Finding help, hope, understanding, and compassionate care for Austin’s chronic pancreatitis meant the world to us, because when you have a child with a chronic disease, the disease and treatment IS your world. Pancreatitis is a debilitating, excruciatingly painful disease that steals “normal” childhood experiences from your family. We traveled to three states and four different medical facilities pursuing the best care for Austin. Rebecca’s Wish will provide education for medical professionals on cutting edge research and treatment options, exemplary patient care, and most of all, hope for a cure to patients and families living with this disease in one location. What a blessing! The promise of a pain-free life out of the hospital for your child and your family is within reach thanks to Rebecca’s Wish.”- Mother of Austin Clements

Carson Halterman

Carson is 14 years old. She is from Odessa, Texas.

Having an unexplained illness is frustrating, maddening, heartbreaking. Yes, heartbreaking. Your child is suffering so violently and you get told it’s everything from a bug, an ulcer, food allergy, to “it’s all in her head.” All the while you are scouring the internet and going from doctor to doctor, hospital to hospital and begging for any and all random tests to pinpoint what has made your child not the child you know. Finally. Finally you find that reassuring doctor and facility that says “we CAN and we WILL help your child.” It still amazes me how so many doctors missed her childhood pancreatic disease. Words can’t describe the relief she and I both felt knowing she now has a team of skilled physicians at UHS in San Antonio. Carson says “Dr Patel, Mrs. Christyn, Rebecca, and nurses like Amanda gave me my happy and my faith back.” And, that’s exactly right. Being so incredibly sick she lost her way. I for one will forever be indebted to all those she mentioned. They gave me my sassy and spunky Carson back. Her life was saved in more ways than one.

Bella Maldonado

Bella is 13 years old. She is from Albuquerque, New Mexico

It was so important to us to research options, visit doctors (most were out of state), talk to other families, and find a solution to the excruciating pain that pancreatitis causes, so that our lives were not dictated by when the next attack would happen or when, how long, and where the next hospitalization would be. We were constantly on edge and wondering would it happen this weekend, how much school would be missed this week, will this flu shot or immunization cause an attack, or what will happen when Bella eats this? It was heartbreaking watching my daughter suffer, begging to go to the hospital and desperately wanting a IV with pain medicine. Bella recalls the pain of pancreatitis as 'very painful, almost like someone is stabbing you....a constant, continuous pain that never went away.' The pancreatitis attacks became part of our routine and after Bella spent two vacations in a hospital, during one summer, is when we realized that this is no way to live a life....we weren’t even living....we were surviving." -Angelina Maldonado, Mother of Bella

Ella Shoemaker

Ella is 11 years old. She is from Boerne, Texas.

Ella was diagnosed with PRSS1 mutation at two weeks of age, but didn't present with symptoms until she was nearly two years old. From that point, she began a chronic cycle of pancreatitis attacks almost every 6 weeks for about a year. We have been amazingly blessed to have the University Health System pancreatic team and palliative care team in San Antonio from the start. I know that has not only saved my child's life in crisis, but also given her chance to just be a kid in good times!! A chance to go to school with her buddies, participate in sports, go to sleepovers, travel for family vacations, and a million other tiny opportunities. The care during crisis is amazing, but the tiny opportunities that come from the consistent and thorough care out of crisis are just as amazing to us! Our family has been given the gift of this team's care and words can never fully express our gratitude. -Mother of Ella

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