When I was first invited to be a part of this year's 40-day fast I had every intention to use this opportunity to draw your attention to the plight of orphaned children in Romania. But, the more I pondered and prayed about what I should write, the more it became clear to me, that while the plight of orphaned children is something that is close to my heart, and it is clearly something that is close to the heart of God, it is not the cause that I was intended to blog about.
Instead of having vivid images from my time well spent with the orphaned and abandoned children of Romania, scrolling like a well ordered slideshow before my minds eye, I was consumed by the images of children right here at home- children who fight every minute of everyday for the essence of their very lives.
Please grant me the opportunity to give you a glimpse into the lives of these priceless children, and the complex, frightening world in which they live. Imagine if you will, a major city with half its power plants shut down. At best, such conditions would produce a "brown out" with large sections of the city working far below optimum efficiency. Now imagine your body with one-half of its energy producing facilities shut down. The brain would be impaired, vision would be dim, muscles would twitch spastically or would be too weak to allow your body to walk or write, your heart would be weakened, and you would not be able to eat and digest your food.
This is what life looks life for the thousands of individuals living with Mitochondrial diseases. Mitochondrial diseases are a group of diseases that few people have heard of, yet they are more common then childhood cancer. For many, these diseases are inherited genetic conditions, while for others the body's mitochondria can be affected by other environmental factors.Mitochondrial disease results from failures of the mitochondria, which are specialized compartments present in every cell of the body with the exception of red blood cells. Mitochondria are responsible for the production of more than 90% of the energy needed by the body to sustain life and support growth. When they fail, less and less energy is produced within the cell. Cell injury and even cell death follow.
If this process is repeated throughout the entire body, whole systems begin to fail, and the life of the person in whom this is happening is severely compromised. Often this progressive compromise leads to an early death. As a result, these diseases primarily affect children, but adult onset is becoming much more common.
Due to their complex nature, and the diverse range of symptoms that a person may exhibit, these diseases are often misdiagnosed. Once a person is given the diagnosis of a Mitochondrial disease only one thing is c
ertain. Time is of the essence.There are no cures for these diseases, and no way to tell exactly how many of the body's cells are affected. As such, there are no life expectancy guidelines to follow. All these families can do is treat the symptoms as best as possible as they arise, and enjoy the gift of life that is wrapped within each fleeting moment.
Families who are walking a path of grief after having lost a child to this disease are also in need of your prayers, and encouragement. Your message could be a much needed ray of hope that will penetrate through the ominous clouds of sorrow looming over them.
As someone who has had the privilege of walking beside a couple of these amazing families, I can honestly tell you that the rewards from taking these steps are immeasurable. I have gained so much more from these families then I have ever given them. These children are living testimonies that God can take something so tragic and use it to change and enrich the lives of people the world over. Will you open your heart and allow these children to enrich your life as well? I guarantee you will be glad that you did.
Here are some of the many faces of Mitochondrial disease.
Eli’s Angels is a not-for-profit organization that seeks to provide ways for these children to enjoy the time that they have by providing gifts for them to enjoy, create lasting memories, know they are special, and by providing support for the families that care for them. Each month these children receive an encouraging note in the mail as well as a small gift for them to enjoy. (Often it is a children’s book.) The child will also receive a bigger package for his or her birthday, as well as one for Christmas. These packages may include books, small toys, a DVD, Music Cd, or a gift card for a local store. The child’s parents also receive materials to encourage them throughout this difficult journey.
What can you do? Eli’s Angels runs strictly off of donations. There are a number of simple, significant ways for you to get involved to help to put a smile on the face of a child. You could: purchase and donate a book of stamps so that monthly cards can be mailed. Donate a roll of wrapping paper- birthday or blank. Donations of new, or gently used children's books, DVDs and music CDs, are also needed. (Christian Cds are great.) You could also send gift cards for Blockbuster, Target, Wal-Mart, itunes …Etc. Donations can be mailed to Eli’s Angels* P.O. Box 423* Eastlake, CO * 80614-0423. If it is easier you can make a donation via pay pal through the organizations website.
What can you do? Eli’s Angels runs strictly off of donations. There are a number of simple, significant ways for you to get involved to help to put a smile on the face of a child. You could: purchase and donate a book of stamps so that monthly cards can be mailed. Donate a roll of wrapping paper- birthday or blank. Donations of new, or gently used children's books, DVDs and music CDs, are also needed. (Christian Cds are great.) You could also send gift cards for Blockbuster, Target, Wal-Mart, itunes …Etc. Donations can be mailed to Eli’s Angels* P.O. Box 423* Eastlake, CO * 80614-0423. If it is easier you can make a donation via pay pal through the organizations website.
Prayer is another supremely important part of this organization’s outreach. Caring for a medically fragile child is taxing on the body, mind, and spirit. The knowledge that they are being upheld in prayer can be the very thing that carries a family though the day. I encourage you to take some time and look through the faces and names of those members of Eli’s Angels and commit them to your prayers.( Photos of all of the children can be viewed at the website by clicking on the title at the top of the page.)
Many of these families have set up websites to keep family and friends up to date on the condition of their loved one. I encourage you to consider “sponsoring” one of these families through prayer and encouragement. Take the time to read their story, pray for them, and send a simple note, or email of encouragement. You never know the impact that your words may have on a family that is fighting for life.
Many of these families have set up websites to keep family and friends up to date on the condition of their loved one. I encourage you to consider “sponsoring” one of these families through prayer and encouragement. Take the time to read their story, pray for them, and send a simple note, or email of encouragement. You never know the impact that your words may have on a family that is fighting for life.
Families who are walking a path of grief after having lost a child to this disease are also in need of your prayers, and encouragement. Your message could be a much needed ray of hope that will penetrate through the ominous clouds of sorrow looming over them.As someone who has had the privilege of walking beside a couple of these amazing families, I can honestly tell you that the rewards from taking these steps are immeasurable. I have gained so much more from these families then I have ever given them. These children are living testimonies that God can take something so tragic and use it to change and enrich the lives of people the world over. Will you open your heart and allow these children to enrich your life as well? I guarantee you will be glad that you did.
Here are some of the many faces of Mitochondrial disease.
This is one Child’s story. TBS Storyline, Ty's Story.To learn more about Mitochondrial diseases, or to make a donation to help fund research toward better treatment, and a cure please visit: http://www.umdf.org/. Thank you for allowing me to be a part of this forty-day fast, and for choosing not to look away from those in need.
Do not forget to entertain strangers, for by so doing some people have entertained angels without knowing it. Hebrews 13:2
5 comments:
Thank you, Smiley, for being a part of the 40 Day Fast. Excellent post, I've never heard of this disease. Thank you for enlightening me.
Blessings to you
Cristy
Beautiful post. I understand some of the pain of watching a child struggle like this, having set with friends as their babies fought for life, some we said goodbye to all too soon. It is so hard (for me, at least) to watch a child struggle for life. Thanks for talking about Eli's angels, and for being a part of the 40 Day Fast.
praying for you today. thanks for sharing.
Wow. Thank you so much for sharing about this disease. I've heard of it, but I didn't really know what it was.
Watching that slideshow was heartbreaking.
It's good to have my heart broken. Thank you for prompting me to pray for these precious kids.
Wonderful post and very interesting. It is so sad to hear of the pricless little ones suffering. Of course, my prayers are with you and them.
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