COTA for Mylin's Cranky Panky

Our Story

In 2024, Mylin began experiencing absolutely debilitating pain, losing 10 pounds in just a month. Eating became nearly impossible due to severe pain and nausea. After countless doctor’s appointments, ER visits, and hospitalizations, Mylin was found to have a 4cm growth on the head of the pancreas. Extensive testing revealed what they believed to be chronic pediatric pancreatitis, with scarring from years of painful flare-ups. Since then, the part of Mylin’s pancreas responsible for digestion has died off, and they now have to take Creon pills (digestive enzymes) to turn food into energy. Without them, Mylin would be unable to thrive. The pancreas continues to atrophy, causing pre-diabetes and unpredictable blood sugars, along with many difficult symptoms. A recent scan showed that things were even worse than Doctors thought. The pancreas is severely shrunken, atrophied, and covered in scar tissue. It has also affected some of the areas around it including the stomach.

Most heartbreaking, Mylin has been in excruciating pain since 2024, missing so much school, rarely seeing friends, and unable to do the things they love. If Mylin makes it through a school day, their body shuts down as soon as they get home, often sleeping until the next morning. Eating is a daily struggle, as almost everything causes nausea and worsens the pain. Mylin now weighs just five pounds more than they did at their 11-year-old checkup, despite now being 5’8″ tall.

Desperate for answers, Tiffany searched for hope and found a support group of parents facing similar challenges with pediatric pancreatitis and all that comes with it. Many shared with her information about the TPIAT surgery, offering a new path forward. The surgery entails a lot (we would really encourage you to look into it and follow our blog) and is a full 1-year recovery. It will also bring new hurdles. Mylin will come home diabetic, and likely asplenic. Both are more manageable and livable than what they are currently living with, but also something we’ll learn to take extra care of as a family.

COTA funds will help pay for travel between California and Ohio for surgery and ongoing medical care, including medicine, diabetes management, pain relief, and return visits. Mylin will need to return to Ohio monthly for the first year. Eventually Mylin will be seen quarterly, then biannually, and years down the road just once annually. Every penny given to COTA in honor of Mylin will go directly towards transplant-related expenses such as medical bills, medication, and travel expenses. COTA ensures all money is used for only these needs, and any funds are available for a lifetime.

 The TPIAT has been our only hope for Mylin to live a normal pain-free life. While it won’t be easy, Mylin is so excited for the possibilities this brings for their future.

Your support through this truly means hope for Mylin and our family. Thank you for helping us fight for a brighter pain free future for My.

The Children’s Organ Transplant Association (COTA) helps children and young adults who need a life-saving transplant by providing fundraising assistance and family support. COTA is the nation’s only fundraising organization solely dedicated to raising life-saving dollars in honor of transplant-needy children and young adults. 100% of each contribution made to COTA in honor of our patients helps meet transplant-related expenses. COTA’s services are free to our families, and gifts to COTA are tax deductible to the fullest extent of the law.