Avery and Morgan are 5 year old fraternal twins. All three have been diagnosed with Mitochondrial Disease, specifically in complex III. Avery thinks she’s a princess (loves everything pink!). She is incredibly smart and makes us wonder if she’s really 15, not 5. Morgan absolutely adores babies (one is always with her!). She is curious about her world and loves to help daddy work on things in the shop. Although Avery and Morgan can’t have any food, they are connoisseurs of water and ice in all forms (snow is a major celebration around the house!). The highlight of their hospital trips is the special crushed ice in the recovery room! Taylor is their one and a half year old sister who shows her spunky personality to everyone she meets. Taylor shadows every single thing Avery and Morgan do and wants to be just like them.
Avery and Morgan were diagnosed with Mitochondrial Disease when I was pregnant with Taylor. They battled severe constipation, diarrhea, stomach pain, and vomiting, which lead to feeding tubes and a special elemental formula diet as their sole source of nutrition. They’ve had numerous problems with illnesses requiring hospitalizations. After years of medical troubles, their specialists did muscle biopsies and blood work, which confirmed Mitochondrial Disease. The girls all fly across the country every two months (or more often) to their specialists for treatment (surgeries, endoscopies, nutritional evaluation, and appointments with their pulmonologist, gastroenterologist, neurologist, and immunologist). We’re very lucky to have some of the world’s best doctors working to help all three girls to stay as healthy as possible.
Taylor was diagnosed with Mitochondrial Disease through genetic blood work as an infant. She has been fighting continuous infections, and eosinophilic disorder, dysmotility, and other GI problems which led to the need for TPN. She’s “fed” through a Central Line (direct access to a main artery in her body) which has helped her grow and develop normally. For the first time in her life, she feels good, has energy, and is thriving. Taylor requires a great deal of medical care, but is such a brave little girl. Her favorite phrase is “all done!” Taylor is so lucky to have two big sisters who understand what she’s going through and can help her cope with the illness. We’re hoping that one day Taylor can join them in their ice “parties.”