Saturday, October 12, 2013

Brayden's Battalion

My heart aches with such a weight of grief. Last night, my friend's son Brayden passed away. And even though we were all expecting it and all knew it was going to happen "any time soon", it is still a shock when it does. Any death of a loved one is. Especially when it's a child. 
Brayden had only just turned 9 a week ago, and he was robbed of his chance of a somewhat normal life by Mitochondrial Disease. It robbed him of his innocence, his childhood, his mental capacities at times, his ability to walk, his ability to eat and his life. 

I ask for your prayers during this time..... for his grandparents, mother and little sister Bryna as they grieve. No family should have to suffer as they have.

Brayden is now at peace. No more tubes, iv's, infections, hospital admissions and pain. 
(thank-you to my friend, Tracey, for putting the emotions into words in a way that I couldn't.)
My heart hurts.
But I am also uplifted in knowing that Brayden is in Heaven, and he is singing with the angels and he is in the arms of Jesus. I firmly and confidently believe that he is healed and he is free of this disease and he is whole. And that one day we will see him again.

But the pain still exists because it seems so unfair that he was born with an incurable disease that slowly killed him. And it's not fair that he didn't get to do the things that other children got to do. He spent almost the whole last year in the hospital, and had spent the last 3 birthdays inpatient. He finally did get his wish though, and he went home not quite a week ago. His Mom became his full time nurse as no hospice would take him due to his complicated medical needs. And it's heartbreaking. He has entered eternal healing, but our pain is still here for now.
Please keep his mom, Cheryl, in your prayers as she grieves the loss of her son, and gives courage to her daughter, who also has this terrible disease.
Father, thank-you for healing Brayden. Please keep your arms wrapped around this family in a way that they feel Your healing on them as well.
I met Cheryl after Bryn was born and I was trying to deal with his reflux. Another friend pointed me to a message board of other moms dealing with medical issues causing reflux---these women have helped me through many struggles, have given advice, encouraged me, celebrated with me, and supported me. I am blessed to have "met" them all, and hope that one day we may meet in person. It's amazing how some of your best friends can be ones that you've never met before!
Before Brayden got really sick, I had never known what Mitochondrial Disease was, and maybe you haven't either. After hearing all the struggles and pain the family has been through in just the last year, I am trying to learn more about it. My friend tried to post info during mito awareness week (Sept 15-21, 2013) on her FB group, Brayden's Batallion, but she was busy dealing with her very ill son and a hospital full of specialists that didn't know what to do for him. Let me help educate you as well!
I found this on the United Mitochrondrial Disease Foundation (UMDF) site:  

What is Mitochondrial Disease?

Mitochondria exist in nearly every cell of the human body, producing 90 percent of the energy the body needs to function.  In a person with mitochondrial disease, the mitochondria are failing and cannot convert food and oxygen into life-sustaining energy.  For many, mitochondrial disease is an inherited genetic condition, while for others the body's mitochondria can be affected by other environmental factors.

About 1 in 4,000 children in the United States will develop mitochondrial disease by the age of 10.
1,000 to 4, 000 children, per year in the United States,are born with a type of mitochondrial disease.

According to, the Challenges of living with mitochondrial diseases are:
  • Affects multiple organs, affects multiple family members, affects multiple generations.
  • Lack of awareness and understanding of the disease
  • Families are continuously forces to expend their very limited energy to explain their disease, advocate for themselves and fight for services.
  • Mitochondrial disease is often an " invisible disease."
    • Good day - patients look fine and healthy. They have more energy and appear rested.
    • Bad day - - patients appear tired to significantly ill. They are obviously fatigued and/or have significant illness. Repeated "bad days"often lead to decompensation and patients have difficulty returning to baseline.
  • Mitochondrial disease is unpredictable. Day to day, hour to hour patients can develop symptoms and their stability can be threatened.
  • Difficulties establishing a diagnosis interfere with a patient's ability to obtain adequate recognition, medical care, adequate insurance coverage, healthcare supports and disability services.
  • Lack of understanding of the disease and misinterpretation of symptoms can lead to misdiagnosis. Further progression of symptoms can occur if the symptoms are missed and opportunities for treatment and support are not recognized.
  • An individual can become symptomatic at any time in life despite the fact that it is inherited.
  • It is difficult to diagnose.

Jack Black has been raising awareness of this disease (I found out that he has a family friend with this) and he's been working with UMDF for several years. You can see his fun mito kid-friendly page here>>>"Jacks" Power Squad.  Fun and quirky.

He has some great PSAs out too. Check them out on Vimeo. <<I hope the link works, since I can't post videos that aren't from YouTube directly onto my page. (or at least, I don't know how to yet) If you don't find them, just do a search for "Jack Black UMDF".

Please keep my friend in your prayers, and consider learning more about this devastating disease. Maybe even donate to UMDF, or to Brayden's Memorial Fund (which another friend has started up).



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