faith4faith.org

Updated 18 November 2009

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Mitochondrial Disease (by Faith, from the November 2008 edition of kidzwonder.com)

If you saw me, you would not know I have a disability. The disability I have is hard for people to notice because you can’t see inside my cells. There is a part of the cell that is called the Mitochondria. I have Mitochondrial Disease.

Mitochondrial Disease is a metabolic disorder. You need your metabolic system to grow and function. It helps your body create energy from food and oxygen. The mitochondria in my cells do not function correctly.

My body is not able to make enough energy. How does this affect me? I have problems with my lungs. I have had pneumonia ten times and have asthma. I also have muscle weakness all over my body. Some days my wrists hurt and I’m not able to write much. Other days my legs feel very weak and on those days I may use my wheelchair to get around. I can get sick very easily and have been in the hospital many times.

Mitochondrial disease is not a common disease. It is hard to diagnose. When a doctor has a patient with many different things wrong with them, they might consider testing them for Mitochondrial Disease. Mito can affect any and all organs of the body. The only way to get a diagnosis is to have a muscle biopsy. The doctor looks at the muscle under a microscope and can tell if the person has Mitochondrial Disease.
Even though I have Mito, I am still a normal girl. I am a homeschooled 5th grader. I like to play with my brother, my friends and my cats. I love to read, write stories, and play piano and violin. The only difference between you and me is that I become tired more easily. I have to be careful to conserve my energy for the things I love to do.

At this time, there is no cure for Mitochondrial disease. The only thing I can do to feel better is take lots of vitamins and supplements to give me more energy and rest. I want people to know about Mitochondrial disease because I hope funds can be raised to search for a cure. How can you help? You can find out more about Mito by reading more on this website or by going to the United Mitochondrial Disease Foundation website, www.umdf.org. They have lots of information on Mito. Maybe you could have a fund raiser to help search for a cure.

I hope you will consider learning more about Mito and how you can help.

What would you like to tell people about Mitochondrial disease?

When you've always had something it's hard to compare having that thing with not having it. I've always had Mito- I don't know what it's like to not have it.

What is frustrating about having Mitochondrial disease?

I have a lot of doctors that I go to. When my Mom says we have a doctor's appointment I have to ask with which doctor. We have lots and lots of appointments. It's hard to keep track of all of them and all their specialities. I once was speaking and accidentally said I was going to see the Paleontologist instead of my Pulmonologist! :-)

I also have to keep up with my fluids. I have to drink lots of liquid so that I don't become dehydrated.

What good things have come from having Mito?

Lots of good friends. People hear about me through my family or my website. They hear about me and start to care about me and become my good friends. I've made so many good friends. Another good thing about Mito is it makes me calm. Because I'm so calm and I sit a lot, my cat and kitten enjoy sitting with me.

What do you like about having you own website?

Most people might feel like they are famous. I like having a website so I can share my creative writing. People can get to know me as if I didn't have the disease. They are learning about me as a person and Mito at the same time.

Faith, what's it like to have Mito?

It's a question I don't know how to answer, since I've always had Mito. A good day is like a weekend day, because I'm not doing too much and don't get as tired. A bad day is when I'm sick. Then, when I try to stand, I feel like I might collapse. I call that "feeling wobbly."

Faith, what's it like to have Mito in the summertime?

It seems there are more bad days in the summer, because I'm doing a lot more stuff. Also, the hotter I get, the more worn out I get. Extreme temperatures (hot or cold) really wear me out."

Faith, what happens to you when the air quality index is in the "red zone"?

It's really difficult to breathe on those days. I get worn out more easily. We try to stay inside as much as possible on those days.

What advice would you give kids diagnosed with Mito?

Don't worry. Having Mito is just like being normal, except with less energy.

Do you have to have blood work taken very often? What's that like?

Not that often. It's like a shot that stays in you for a few seconds.

What's it like to ride in a wheelchair?

I would describe it as going somewhere while sitting down. It helps me not tire out so easily when we are at the zoo, aquarium or the mall. Sometimes I wonder if other people think I can't walk. I think it may surprise them when we get where I'm going and I get out of my wheelchair and walk around. I think most people in wheelchairs don't get out and walk around.

How has life been different since you got the wheelchair?

I used to get so worn out without my chair. I still get tired, but not as often. I can go more places and do more things. We don't have to stop for me to rest, because I'm riding in the chair.

What's it like when you go to a playground with a bunch of other kids?

If the kids are playing games like tag and freeze tag, I don't join in. Running makes me wear out very quickly. Instead, I play on the playground equipment. Sometimes there are other kids who don't want to play tag and we play together.

Do you like homeschooling?

I love to sleep in the morning. Then, when we get going we can be done much quicker than spending a day at public school. I like being at home. It's fun to go to Master's and Timothy with my other homeschool friends once a week.

What's aquatherapy like?

It's like swim lessons, but in therapy form. I love to swim laps around the pool. I wear a special flotation belt around my waist and I can swim around the pool with my therapist, Miss Kelly. Sometimes I dive for rings in the shallow end of the pool. I also play basketball in the pool. I have to hold my arms up with the ball and try and get the ball into the basket. It's in the deep end so I have to stay afloat AND get the ball in the basket. There is one part that I save for last. I swim without my belt. I save it for last because it's my least favorite thing to do in the water. It's hard to do and a little scary, but I'm getting better every week. I can almost make it across the width of the pool.

What's a typical day like for you?

In the morning I take Flovent (the "orange puff"), Carnitor, and Co-Q10. Fortunately, they don't have much of a taste. In the evening, I do the same, plus Singulair. I do "The Vest" twice a day for 20 minutes. It vibrates on my lungs and makes me sound like a sheep! Other than that, I love to have fun learning, playing with my family and friends, reading, playing music, and having fun!

Are you nervous when you have to go to the hospital?

When I have to go to the hospital, I'm too sick to be nervous! I'm so wrapped up in needing to get well, I don't pay attention to being nervous.

What's it like to stay in the hospital?

Even though my Mom stays with me, I get homesick for my home, my bed, my family, and my cat! Recently, when my brother called me on the third day of my hospital stay and put my cat Shelby on the phone, that's when I really lost it!

Have a question about Mito? Email us!