Kelly's Story

​

Kelly entered the world on Mother’s Day, 2005. She was a wonderful Mother’s Day present to her mommy, dad and three big sisters. She weighed in at 9lbs 11oz and looked very strong and healthy. From the very beginning, Kelly had a lot of varied health problems that kept us on our toes, mostly centered on digestive issues that kept her from being able to eat any foods.

After many tests, several hospitalizations, and a lot of tears, our doctors helped us sort out the source of Kelly’s troubles. Kelly’s doctor suspected that she (along with her older sisters) had a Mitochondrial Disease (Mito). A muscle biopsy confirmed the diagnosis when Kelly was 2 years old. 

 Mitochondrial Disease is a disease of energy deficiency. The mitochondria are the building    blocks of the cells, present in every cell in our body. They are responsible for converting food and oxygen into energy. When they don’t work properly, the cells cannot produce enough energy to support major organs or muscle groups, and those organs and muscles then begin to fail. Mito can affect any organ, and different people can be affected in different ways. It is a progressive disease that has no cure.

Kelly’s first few years were quite a struggle, because she was not able to eat any foods until she was four years old. After multiple scopes, it was determined that she had colitis and immune dysregulation. Food made her very sick and caused a lot of pain. When Kelly was three, she had a feeding tube placed in order to maintain proper growth and nutrition. She still depends on that tube today, even though she has been able to slowly add some regular foods to her diet.

Because her scopes and colon biopsies looked so bad, even without food, she ended up becoming steroid dependent when she was very young, in order to keep her severe colitis under control. While we really didn’t like the side effects that the steroids gave her, we also were happy that she was finally able to be mostly pain free and enjoy life.  After several years of steroid use, it became apparent that immune suppression was going to be a long term need to keep Kelly’s colitis in check, so the doctor switched her to a low dose chemotherapy drug, which would allow us to better monitor the side effects of the treatment.

Mito affects Kelly in several other ways. She is plagued often by leg pain, and gets easily worn out.  Her blood sugars are often low and it is a challenge to keep them stable. When she gets sick, even if just a common illness, she will often need medical intervention such as IV fluids to get her better.  Kelly sleeps with a bi-pap ventilator and fluids overnight, which helps her body to replace its energy more efficiently.  She also takes a “Mito Cocktail” everyday, as well as several other medicines.

Kelly loves doing crafts and painting. She enjoys playing with dolls, especially American Girl dolls. She is an animal lover and especially likes horses, panda bears, and dolphins. When we chose her name, we understood that the meaning meant “brave fighter”. Kelly has lived up to that name many times throughout her young life, and brings sweetness wherever she goes!