We've come a long way!

Mom and Dad, Julie and Bryan, are just a normal couple. We've done a lot of research, and so far we've only found one polymorphism that may cause human disease. People ask me, "Why can't you just test him for all the mutations?" My response is, "How can you start a fire with no wood?"

You see, so many tests have yet to even be developed. In addition, before the medical community makes any assumptions about the typical presentation associated with genetic mutations or polymorphisms, they must have a significant group of affected individuals who all present in the same way.

And that is why we ask for people to support us in funding more testing and research. It's a big mistake to assume that these mutations are rare. In one gene alone, called POLG, there were only two known mutations in 2004. Now there are over 100 known mutations. To learn more, ask me or read about the mutations yourself. http://tools.niehs.nih.gov/polg/

We aren't famous, so we don't have a tremendous voice. HOWEVER, small voices matter or YOU wouldn't be here, right? You can support us without spending any money by dressing up as a mitochondrion. We'll just add your picture to the list. Check it out. You can also support our efforts by buying and wearing t-shirts. Check out the designs. You can also support mitochondrial research by supporting the Jude fund through UMDF.

Bryan and I met in college. Year? 1996. Wow. From there, we went our separate ways. Our paths reconnected, and we got married in Louisiana in 2001.

Before Jude, I went wherever I wanted to go and did whatever I wanted to do with Jett. When I was pregnant with Jude, I remember telling one of my friends, "My life is so perfect. Nobody's life is this perfect, and I just wonder when it is going to rain on my parade." Call it mother's intuition, but I knew that God's plan for Jude was very different. His birth announcement stated, "You saw me before I was born and scheduled each day of my life before I began to breathe. Every day was recorded in Your Book." Psalm 139:16.

Bryan is undoubtedly a "people person." He is easy-going and funny. He gets involved in whatever I ask him to do, but his ultimate goal is being a loyal employee. We really appreciate his company's great people and benefits. After he gets off work, we take the kids to swimming classes, go on a walk... we all four love family time. Since we found out what Jude has, we've done so much as a family. We realize that life is very special and shouldn't ever be taken for granted. Bryan is the best daddy and husband anyone could ever want. If it all ended tomorrow, I could look back and say that it couldn't have been better.

As for me, I've always liked to teach and volunteer. I guess Jude and his condition are a blessing for me. My eyes were opened as a teen during a mission trip to Mexico. It was an amazing experience. Almost 15 years later, I've been through multiple states, schools, organizations, and projects. I have had many humbling life experiences, but once again my eyes were opened when we had Jude. I realized that I could do a whole lot more than what I was doing before. I quit my part-time job as an adjunct professor, and now I focus on mitochondrial disease awareness and research. Life changes. Hearts change. Minds change. Needs change. My biggest fear is the next time I will open up my email messages from the Mito Support Group to find another message from a mom and dad saying their child finally lost the fight.

I think too often people get caught up with questions like "Why do I have financial problems?" or "Why did I lose my job? or "Why did my parents divorce?" or "Why is my child like this?" And on the bad days, we wonder why Jude has to go through this. However, if you live in the United States of America, no matter what your circumstance, you probably have more resources, more opportunity, and more treatments than most of the world. Because this is not a perfect world, there are many big, very sad problems out there. There are also many factors that determine outcomes in life. But I know this: Even if you don't believe in God, you should still support the greater good of humanity. Doing so makes the world a better place to live. I believe that God gave us Jude for a greater good. We don't know the reason yet, but we know that our situation will make a difference. Yes, we have watched our Jude suffer, and we have cried. But for as long as he is here, his life will be better than so many needy children. And instead of focusing on our lemons, we are trying desperately to make lemonade.

Before we were married, we both knew we wanted to adopt. Since each child in our family has an estimated 25% chance of having mitochondrial disease, we are not going to have anymore of our own. Having Jude confirmed that desire to adopt, and in that regard, he will help another child in need. I recently read in the newspaper about a couple where one wanted to adopt and the other didn't. The columnist had adopted her own child and responded by saying that as soon as the baby was in her arms, it didn't matter to her one bit how it got there. Here's the best part. She said that for every woman and man out there who desperately want children, there are children out there who desperately want parents. WOW! I wish I could remember who wrote it. Anyway, we are happy that Jude showed us that he has a brother or sister out there that he hasn't met yet. We look forward to adopting our third child, and that day will come when it is right for our family. In the meantime, we want to help our second.