Help Support Ben’s Buddies and Learn More About Mitochondrial Disease

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Ben's Buddies Mitochondrial Disease Support

Meet Ben.

Ben is a sweet 5 year old boy of my good friend Kerri. He also has a twin sister whom he adores. A few years ago Kerri and her husband realized that Ben wasn’t quite hitting the milestones that his sister was.

After many tests, doctors, and specialists they finally received their answer.

Ben has been diagnosed with a genetic defect that causes Mitochondrial Complex 1 Deficiency. The short explanation is that he has a problem converting chemicals into energy. Your brain, lungs, teeth, skin, etc… all require that your mitochondria convert what you eat into the different types of energy your body needs. Mitochondria are a special entity, each of your cells contains thousands of them. They even have their own DNA different from what is typically considered “your DNA”.

Ben has a genetic mutation in his DNA that causes specific steps in the energy conversion process to not work properly, or at a reduced level. Because Ben’s energy conversion process is flawed, he can’t produce enough energy to enable proper development, hence his developmental delays. Your teeth, skin, eyes, etc.. all require significantly less energy to work than your brain, heart, and lungs do, which is why there are no visual indicators that a child has a mitochondrial condition.

Unfortunately, the bad news is these diseases are progressive and no cure currently exists. The typical timeline for decline can range from 4 years of age to 20 years of age, with most children passing away between 4 to 10 years old.

The team of doctors that support Ben haven’t been able to determine which gene specifically is causing the problem, because the technology for testing them is a little out of reach. We could spend millions of dollars and never find the actual gene. Luckily, the lab Kerri works with is one of the leaders in this type of research, and they hope to have a test in the next 3-5 years that will help identify the gene.

Here are some facts about Ben and living with Mitochondrial Disease

  • Ben’s condition isn’t contagious. The genetic mutation occurred when he was conceived, and is not a contractible disease.
  • Ben’s parents aren’t adverse to questions or talking about it. Obviously they would like everyone to be considerate of the situation, but if you have questions, please ask!
  • Ben’s condition makes everything behave differently in his body, medicines, chemical, etc.. all affect him differently than normal people. For that reason, he is in much greater danger from being sick (even a cold) than normal people are. Even a common cold could really impact him so sanitizing is a must.

Yes, this is very sad news, but it does reinforce how important enjoying daily life can be. Ben and his parents aren’t just taking their diagnosis and leaving it at that. They’ve decided to help others and have created a great online auction to raise money for Ben’s Buddies. All proceeds will be donated to Mitoaction under Ben’s Buddies for the 2013 annual Mitowalk.

If you’d like to peruse the items on sale please visit the Ben’s Buddies Auction on Facebook here.

For more information, I encourage you to browse this site: http://www.mitoaction.org/mito-faq

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Comments

  1. Tree L.
    Twitter: amotherofpearl
    says:

    My heart goes out to the little guy and his family! I have twin boys now 16, and one is much smaller and not as strong as the other. However, they are both fairly healthy. .thank goodness! I’ve never heard of mitochondrial disease, but will be aware now. Thank you for sharing with us.
    Tree L. recently posted..Dip Into Summer with NEW Cold Stone Creamery Flavors #IScream4IDMy Profile

  2. Emily says:

    I follow a blog called praying for noah that is another little boy with Mito and it’s really opened my eyes to what the go through. Such a sad disease.
    Emily recently posted..Unlimited Summer Fun With Banana BoatMy Profile

  3. Maria says:

    Thank you for sharing their story with us. I work in healthcare so I would love to follow along. So touching!
    Maria recently posted..My Day at LSU Football StadiumMy Profile

  4. I have never heard of this, I am sorry. Thank you for informing your readers.

  5. Stacie @ The Divine Miss Mommy
    Twitter: StacieinAtlanta
    says:

    Thanks for sharing. My nephew just turned 18 and has had a Mitochondrial disorder for over 6 years now. He is a great kid and has done pretty well considering.
    Stacie @ The Divine Miss Mommy recently posted..StayMade Functional Bedding Solution for Kids #KickStarterMy Profile

  6. Amanda
    Twitter: frugalgreenmama
    says:

    This is the first time I have heard of this disease and it truly tugs at my heart that such a little one is affected so adversely! It is great you are spreading the word Danielle!
    Amanda recently posted..Getting Pregnancy Pain Relief Thanks to Answers at WalgreensMy Profile

  7. Tiffany C. (Fabulous Mom Blog)
    Twitter: FabMomBlog
    says:

    I have never heard of this before, thanks for sharing their story and spreading the word on how to help.
    Tiffany C. (Fabulous Mom Blog) recently posted..Cursive writing in the 1st grade, are you kidding me?My Profile

  8. Debi@ The Spring Mount 6 Pack
    Twitter: thespringmount6
    says:

    I have never heard of this disease before. Thank you for sharing. He looks like a little fighter.
    Debi@ The Spring Mount 6 Pack recently posted..Ways to Combat AsthmaMy Profile

  9. Jamie @ Roubinek Reality
    Twitter: jmroubinek
    says:

    So great that you are helping to raise awareness! I’ve never heard of this and my heart goes out to his parents and family. He definitely looks like such a sweet little boy.
    Jamie @ Roubinek Reality recently posted..Find More Cell Phone Parental Control with ZactMy Profile

  10. Angela says:

    It’s truly wonderful that Ben’s parents can look beyond their own needs and do this to help other kids like Ben. My heart goes out to little Ben and all the other kids who have this illness. I hope that one day very soon there will be some medical breakthroughs to help these kids.
    Angela recently posted..College Freshman Essentials at Dollar GeneralMy Profile

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