Rebecca

I am in my sophomore year of High School and it has been probably the hardest year fatigue and health wise in a long time. I started in the fall of 2015 with four classes, and then have had to drop it back to one, and now I am at two. I am so frustrated. I just want to be a healthy, normal kid. A normal teenager who can do activities, hang out with friends, go to school and not feel awful all the time. This year has just been a hard one.

The doctors are trying different things to help me feel better, and slowly, I think I am getting a bit better. As much as I hate having a central line, the IV fluids help. The doctors have added back things my body needs into my IV fluids that I get 4 days a week, and that has helped. One step forward, some days, and then 4 steps back.

I have a lot of goals. I want to do cheerleading again, I want to do barrel racing horseback riding, I want to go to college to be possibly a nurse anestheologist, or speech therapist. As I have been having a hard time with the traditional school setting, we have decided to change school settings and I am starting at a Charter School if all goes well on April 4th. I am very excited as it is much smaller both in amount of students as well as in physical space. I hope that this will help to make me less fatigued, and be better able to work with my academic needs. I am very excited.

My plan right now is to build up my endurance, as my body gets healthier. I want to be able to work at one of the local Therapeutic Horse Farms and work with the kids that go there who have special needs. I love horses, animals, hanging out with friends, country music, babysitting, and of course cheerleading.

I ‘d love to be on the go all of the time but I have to pace myself. If I don’t then I end up to fatigued to do anything. We live in a great neighborhood where I can play soccer, basketball, four square, go walk down town. Hard to not feel good when you just want to be on the go.

This summer I look forward to our family reunion and family visiting from England. I hope to get to go to the Cape to spend time with my Dad, grand parents, friends and family down there. I would love to go to New Jersey and New York to be with my family there as well.

I really have the hardest time with Mitochondrial disease, as I am the most affected. I want a cure so that I can be normal like my friends, have children of my own some day, and not be so restricted by my disease. I wish my whole family were healthy.

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Name: Christopher White
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