Showing posts with label Mitochondrial disease. Show all posts
Showing posts with label Mitochondrial disease. Show all posts

Thursday, October 21, 2010

Please pray for Brett


Two weeks ago I asked you to pray for Brett Cochran, a 10 year old boy who suffers from Mitochondrial Disease- the son of a dear friend. For those of you who may have never heard this disease, or maybe you have, but don’t know exactly what it is.


“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.”- United Mitochondrial Disease foundation This is what life looks like for thousands of people affected with Mitochondrial disease


Mitochondrial diseases (Mito) are a group of  diseases that results from failures in the body’s mitochondria, which are specialized compartment present in every white blood cell in the body. Mitochondria are responsible for the production of well over 90% of the energy needed for 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 will follow.


As this process is repeated throughout the body, entire systems will begin to fail, and the life of the person in whom this is happening becomes severely compromised. This progressive compromise often leads to an early death. As a result diseases primarily affect children. Many Children who are diagnosed with Mitochondrial disease before the age of 10 will never reach their teenage years.


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 certain. 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.


Protecting and enjoying the gift of Brett’s life is something that his parents have been faithfully doing since Brett received his diagnosis at the age of three. Staying on top of his condition, and making sure that his critical moment by moment needs are met is an endless task that requires much sacrifice.


Because of his very complex and fragile condition Brett’s immune system has been severally compromised, so fighting common illnesses such as a cold, or a flue are much more difficult, and can be life threatening for him. As a result, Brett often spends well over 100 days a year in the hospital.



From very early in his journey with Mito, Brett has suffered from serious respiratory challenges. Often these challenges are the very things that have landed him in the hospital fighting for his life on several different occasions. It was these challenges that brought him by ambulance to the ER last month. He has been fighting for recovery in the hospital ever since.


This lengthy hospital admission has led Brett’s parents to have to take a very long, hard look at what the future will hold for their son, and too consider how they should proceed with his long-term care. This very careful and prayerful evaluation has led them to make the decision that it is in Brett’s best interest to be given a tracheotomy to help reduce his difficulty in breathing and to make cleaning his airway much easier.


As you can imagine, this decision was not an easy one for his parents to come to. The risks involved in this surgery are very serious and can be life threatening. For Brett there is even greater concern because he does not respond to anesthesia very well at all.


At the present time Brett’s medical team is quickly moving forward with all of the pre-op testing and evaluations that must be completed before surgery can take place. His surgery is scheduled for some time on Monday, October  25th.


Your prayers right now are critical!

Brett will have to be weaned from many of the medicines that he is on prior to surgery, and he can have no food for while. This is a huge risk for him. Please pray!



Please pray:



1. For Brett’s safety and protection throughout this entire process.



2. For the guidance, wisdom, and skills of his medical team. For Brett’s parents to know the will God has for their son as they move forward.( If this is not God’s will may He make that very clear to them in this preparation process.)



3. For peace that surpasses understanding as his parents endure the weight of this procedure and trust God with the outcome.



4. For smooth recovery with no complication.




5. For improved quality of life for Brett.




6. For the will of God done in Brett’s life- that He might continue to glorified through Brett. His story that has touched the lives of so many!


If you would, please pray for all those who love Brett and his family from a distance- as we wait for news and trust God to provide the best in this situation. Speaking for myself, I can say that I am at peace knowing that God’s hand is on every aspect of this situation. He breathed life into Brett and He has a perfect plan that He is working to completion in Brett’s life. I know that God will continue to provide for Brett and his family in every way.



My heart aches with the immense suffering that that precious little boy has had to endure throughout his entire life. Five years ago, through circumstances that only God could orchestrate, I was given the opportunity to step though the door of Brett’s life. I can honestly say that my life has never been the same since! It is very difficult be halfway across the country form them right now.



Thank you for taking to the time to pray!




Trusting in God's Love and Grace,




Melissa



Friday, September 26, 2008

Raising support for Mito and Down Syndrome

As we come to the close of another week I want to draw your attention to a couple events that you many not be aware of. That this week- September 21-27, has been designated by many states across the nation as Mitochondrial Disease Awareness Week. Various events are being held to bring awareness to, and garnish support for the treatment of, and research for, Mitochondrial Disease. To learn more about this disease, and how you can help put a smile on the face of a very sick child please click here.

If you live in the Alpharetta, GA area I encourage you to consider attending the 2nd Annual Music for Megan, Concert for a Cure (benefiting the
UMDF). It is a fabulous event for the entire family! To learn more, or to make a donation to help fund research to a cure.” please visit http://www.musicformegan.org/


Another exciting event that is taking place this weekend is The LADSS 3rd Annual Down Syndrome Buddy Walk. My parents have been working diligently for the past few months in an effort to make this year’s walk an enjoyable event for the entire family! This year’s event will feature door prizes, raffles, an obstacle course, Ronald McDonald, face painting, a balloon artist, cookies and of course the 1-mile awareness walk. If you are in the Pontiac, IL area I encourage you to join us for a fun filled afternoon. For more information please
click here

Friday, July 25, 2008

Entertaining Angels

Today, I have the privilege of partnering with Inspired to Action by taking part in the 40 day fast- a collective effort by 80 bloggers to equip and inspirer people to take action for those in need around the world. To those of you who are new to my blog, thank you for taking the time to read these words. I pray they will inspirer you to take action for those in need. Whether the need is around the corner, or around the world may God bless you as you serve the least of these. I encourage you to take a look at Clint's blog, as he is blogging, and fasting for team two today.

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 certain. 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.

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.



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.



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

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