MITO AWARENESS WEEK

I have heard about my mom writing about me on this blog, and I thought it would be my turn for a change. So, this is Jacob! I am sure you’re getting a bit bored about her constantly cheering or worrying about me, so here is a fresh perspective!

This week is Mito Awareness Week. I wanted to make you all aware again of what Mitochondria are. I am going to make it simple. I am going to compare a Battery with Mitochondria.

• A new (healthy) Battery generates energy for boom boxes, cameras, and flashlights – producing light, sound and photographs.
• Healthy Mitochondria are the power plants in almost every cell, in every person’s body. Your heart, brain, muscles, kidneys, and lungs depend on the mitochondria to generate energy for them to work properly.
• The Mitochondria take the food we eat and the air we breathe to produce energy we need to jump rope, read a book, or sing a song.
• An old (sick) Battery has a lot of trouble making your things work. The flashlight becomes dim or leaves you completely in the dark. The boom box plays music slowly or not at all and cameras cannot take pictures if the battery is dead.
• Damaged (sick) Mitochondria can cause children and adults to have problems in making their bodies work. Some kids cannot digest foods, cannot move their legs, cannot hold their mother’s hands, or just cannot find the energy to get out of bed in the morning. They may lose their sight, have seizures, or cannot hear their father telling them good night.
• Mitochondrial disease is NOT contagious, which means you can’t catch it by touching or being near someone with the disease. It is a genetic disease which means it is part of your family’s health history.
• What can you do to help? Tell your family, friends and other people about Mitochondrial Disease! Make people aware!
• To find out more go to the official website of United Mitochondrial Disease Foundation – www.umdf.org.

Also, do you know my really cool sister? I love her more than anyone else in the world. I can simply not resist smiling when I see her entering the room. She plays and cuddles with me every day, and she is so proud of me. Her 2nd grade teacher told mom and dad that she takes every opportunity to talk about me in class. I was really happy to hear that. Sometimes she likes to show off my things to her friends, like my new super cool bed that goes up and down with the push of a button. I think all her friends have now tried out my bed!

Last Friday when I was pretty sick in the hospital, she cuddled with me in bed and whispered to me: “Jacob, it’s ok that you’re sick this weekend, BUT next weekend is mine. It’s my birthday, and I want you to stay home with me and mom and dad”. I thought that’s a piece of cake. I do anything for Sarah. Well, Thursday night I spiked a fever of 101.1 again. Mom already saw me back in the hospital the next day, but I pulled through! Friday morning, I was doing great again. Sarah got to do her slumber party with her girl friends. I loved that mom let me dance with them for a little bit. I also loved hearing them laugh all night long. Yesterday, Sarah was going to have her pool party. I was looking forward to it, hoping that mom and dad would let me get in the pool one last time as well. An hour before the party was supposed to start, the weather turned bad. My mom didn’t have a backup plan, which she otherwise always does. We ended up having the party in our basement instead. Sarah and I could see that mom and dad were stressed about the downsized party in our basement…My cool sister then said: “It doesn’t matter. Jacob is not in the hospital, so we do get to have a party.” She is just a bit wiser than most of us. Did I tell you she just turned 7?

The basement got a bit stuffy with all the kids running around. I had trouble coughing and breathing for awhile there. I was definitely happy when Kadir decided to stay on after the party, and simply hold me in his lap on the couch upstairs. I felt so much better after that, and went straight for beautiful dreams when the party was over.

My mom is telling me that I can start school tomorrow. I am so looking forward to it. Another girl at Bal-Swan who moved on to school left a lot of her equipment for me, so I am excited to try it all out – and of course hang out with my new class mates and new teachers!

Hoping for another week at home!

Love, Jacob.