Who is Macey?

Macey was born with a rare disease called visceral myopathy. Macey was given one week to live, so we are super blessed to have her here with us today. Her life however, has been a constant battle. Maceys disease affects her smooth muscle which lines your organs. She has been in the operating room 70 plus times with numerous attempts to get her small bowel working. Macey is currently on TPN which feeds her through her heart. Her intestines have shut down and are causing a great deal of pain. The doctors believe her disease is progressing and they said that anymore exploratory surgeries to get her small intestine to work would do more harm than good. We are at a crossroads with Macey. Our only option left is a stomach, liver, pancreas, intestinal transplant. Unfortunately, the transplants are fairly new and the data of survival only supports 5 years. We have tried to hold off as long as possible but have decided to do the transplant evaluation on May 21, 2017. After the evaluation, we will decide as a family what to do. Macey’s pain is increasing and at times unbearable. We still have some good days and try to make the best of them. Despite everything, Macey is a smart, beautiful, kind young lady that puts a smile on anyone’s face that meets her. She tries very hard to fight through the pain and enjoy life. Macey’s dream has always been to be in a pageant. She has been chosen from many qualified applicants throughout the state as an Official State Finalist in the 2018 Miss Maryland Teen USA pageant. the excitement of this opportunity has really carried her through some of her tougher days. I am praying that she makes it to the pageant and we get to see her compete prior to her transplant. It would be a memory our family would cherish for a lifetime.

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