At the 2018 LA Party for a Cure fundraising event, Mission: Cure had the honor of awarding the Courage Award to four remarkable young individuals living with chronic pancreatitis. While the event as a whole was a verifiable success, raising over $150,000 to support the search for a cure, it was the stories of Matthew Musto (aka blackbear), Kayla-Ann Keagy, Diana Miranda, and Diego Miranda that made the biggest impact of the night. Over the next few days, we will be sharing their stories of how chronic pancreatitis has affected their lives and the hopes they hold for the future, as well as updates from our scientific research team who attended the event and are working on cutting edge research. Today we are starting with the stories of Diana and Diego Miranda, two siblings who were both diagnosed with chronic pancreatitis before the age of seven, in their own words:
Dealing with chronic illness almost all my life hasn’t been easy. When I was a kid, my “tummy” often hurt horribly. I didn’t have energy to eat or go outside and play. My parents tried to make me eat because I was losing weight.
At age four, I had to explain to other kids why I was always sick. For about two years, doctors told my mom that it was a “tummy bug” or constipation and that she worried too much. My mom had to leave work to get me from school nearly every day because I couldn’t stop vomiting and/or was in terrible pain. At age 5, I was diagnosed with acute pancreatitis. My mom had to quit school and her job to be with me at all times.
When I was 7 we were told that I already had chronic pancreatitis because there was so much scarring on my tiny pancreas. They said they couldn’t do anything else to help me but the disease would get worse with time. Although I didn’t understand much, I would catch my parents in tears and that made me really sad. No parent should have to go through this.
Children’s Hospital Los Angeles is a place I have called my second home for many years. Yes, it’s a great hospital, but no child should ever have to call a hospital home. At CHLA, we discovered that my type of pancreatitis was hereditary and also a high risk for pancreatic cancer.
I tried to enjoy my childhood, but something kept getting in the way – unbearable pain. In addition to dealing with constant pain, I was missing important events of my life like the first day of school, high school dances, family parties, friend sleep-overs, etc. Pancreatitis robbed my childhood.
Many times, we went to the ER because of severe pain (I knew pancreatitis pain), but we were told everything looked good on my labs, and we were sent home, helpless, hopeless and in so much pain. One day, a God-sent doctor at the ER explained that after many years of “pancreas attacks”, the pancreas starts to “burn out” and the labs no longer show pancreas inflammation even when a person is having excruciating pain. He also told us that he suffered from pancreatitis himself.
It shouldn’t be only doctors who suffer from this horrible disease that understand chronic pancreatitis! We need to educate health care providers on this! We have to work hard to find a cure for this horrific disease so no child or adult suffers this much! Life is beautiful! We pancreatitis sufferers fight hard to live it to the fullest. All we wish for is a pain-free life.
At age 13 my pain was no longer manageable. My parents had researched and learned about a surgery called TP/IAT or total pancreatectomy and islet auto transplant. It was our last hope.
I was 14 when I was transferred by air to UCSF Medical Center and had my entire pancreas, along with my gallbladder, spleen and part of my duodenum removed and my islet cells transplanted into my liver. Recovery was slow and painful. I had to learn to deal with Insulin-dependent diabetes.
The worst part during this period of my life, was having to deal with opioid withdrawal symptoms. It was horrible. I don’t even want to think about it. After more than a month at UCSF, we came back to LA and I was immediately admitted to CHLA because of complications. I had to have another surgery to correct the problem. I had serious complications and almost died.
I’m 17 now. It’s been four years since my pancreatectomy and three years since my last surgery. I still deal with pain and nausea every day. My pancreas was very damaged by the time I had it removed, so I didn’t benefit much from the islet auto transplant and I depend on insulin 24/7.
But finally, I live at home, not in hospitals. Even when the pain gets bad, I rarely take strong pain medicine. It has been a year since my last hospital admission but I still struggle every day.
I have always done well in school. This school year (my senior year), I finally returned to regular school after years of home/hospital school and independent studies. I had the best teacher in the world, Mr. Weber, who understood me. Mr. Weber was patient but demanding. He reaffirmed my potential and, along with my wonderful doctors, helped me gain confidence.
When I graduate from high school I will pursue my dreams to become a doctor. I want to save lives just like the many doctors that saved me.
Please help so many kids, including my little brother, who suffer from pancreatitis. They deserve to enjoy their childhood and achieve their dreams!
Hi! I’m Diego and I’m 8 years old. When I grow up I want to be an astronaut, a famous YouTuber and learn to play guitar. I love watching gaming videos, and my favorite YouTuber is “Infinite List”. I enjoy playing Connect 4. I can’t play sports because it makes me hurt a lot.
I love my family! We enjoy going to the beach and the park, but mostly, we enjoy, and are very thankful, every time we eat together. I love eating!!!
I have a beautiful sister, Diana. She has taught me to be strong and not be afraid. Especially when I’m in pain, and have to be poked for labs or for IV lines. We both have chronic pancreatitis. It makes me feel a lot of pain in my tummy and my back and I get dizzy and feel weak. That’s when I have to get admitted to the hospital to get pain medicine and IV fluids.
My sister doesn’t have a pancreas any more. When she gets sick, I take care of her. I think one day I’m going to have to get my pancreas taken out too, because there’s no cure for chronic pancreatitis. Me and my sister are classified as gifted by the LAUSD district. Yes, I’m very smart, so I am good at following my fat-free diet because I know that will help me be healthier, but is hard because I wish I could eat yummy regular foods like cake, ice cream, pizza, burgers, french fries, hotdogs, and tacos.
CHLA is my favorite hospital because they make me feel better. My favorite day in the hospital was when I met a tan colored dog that visited me in my hospital room. My stomach pain is sharp when I have pancreatitis and it gets to 10 out of 10. That’s really bad pain! In January, a stent was put in my pancreas ducts and it helped me a lot. I was in pain for about a month afterwards, but it kept me out of the hospital for 7 months. I don’t say bad words, but I’m going to say that I hate it when I get stomach and back pain. We all get very sad when that happens. I wish pancreatitis didn’t exist!