My caboose, my baby, my now almost 15 year old has had a very difficult several years, lots of Drs appointments, tons of testing, he missed a year of school and has been homebound for a year. Some days he can barely get up, loses his vision for 30 minutes at a time, has been passing out randomly for years, and has a hard time just making it through some days. Heartbreaking does not describe the feeling that I feel as well as our family. Spreading the word and telling people about Mitochondrial Disease is so very important to me. Each day is difficult because this is a progressive disease with no cure. Devin's body is trying to produce energy but with the cells dying off, the energy is taken from his fat, at this point...he doesn't have much...then it attacks muscle....once it attacks muscle....it attacks all vital organs...Please take a moment to learn about this disease so that we can spread the word.....We need a cure!
So let me tell you about the disease...Mitchondrial Disease is a chronic, genetic disorder that occurs when the mitochondria of the cell fails to produce enough energy for cell or organ function. Mitchondria are found in every cell in the body. They are known as the powerhouse of the cell. Like batteries, Mitochondria are responsible for creating more than 90% of cellular energy. They are necessary to sustain life and support growth. When Mitochondrial failure causes cell injury that leads to cell death....the mulitple organ cells die and there is organ failure.
Diseases of the mitochondria appear to cause the most damage to cells of the brain, heart, liver, skeletal muscles, kidney and the endocrine and respiratory systems. Depending on which cells are affected, symptoms may include loss of motor control, muscle weakness and pain, gastro-intestinal disorders and swallowing difficulties, poor growth, cardiac disease, liver disease, diabetes, respiratory complications, seizures, visual/hearing problems, lactic acidosis, developmental delays and susceptibility to infection.
.Mitochondrial disease is unpredictable. Day to day, hour to hour patients can develop symptoms and their stability can be threatened.The prognosis for patients with mitochondrial myopathies varies greatly, depending largely on the type of disease and the degree of involvement of various organs. These disorders cause progressive weakness and can lead to death.
Can you see that this disease needs a lot of attention? We need research, we need a cure! This disease is progressive and there is no cure at this time. As time goes on these children (and some adults) are getting worse. Please help me spread the word.
In September there is a Mitochondrial Disease Awareness Week. Although there is not a walk or a Chapter here in New Orleans handling a specific event. I want to make sure that everyone that I know and everyone that I can reach out to knows about this devastating disease that has changed our lives forever.
Please check out the following organizations if you'd like to learn more.
Muscular Dystrophy Association3300 East Sunrise Drive
Tucson, AZ 85718-3208
mda@mdausa.org
http://www.mda.org
Tel: 520-529-2000
800-344-4863
Fax: 520-529-5300
United Mitochondrial Disease Foundation8085 Saltsburg Road Suite 201
Pittsburgh, PA 15239
info@umdf.org
http://www.umdf.org
Tel: 412-793-8077
Fax: 412-793-6477
National Organization for Rare Disorders (NORD)P.O. Box 1968 (55 Kenosia Avenue)
Danbury, CT 06813-1968
orphan@rarediseases.org
http://www.rarediseases.org
Tel: 203-744-0100
Voice Mail 800-999-NORD (6673)
Fax: 203-798-2291
SOURCE: National Institute of Neurological Disorders and Stroke
Know that I am thankful that you read this. Please help us find a cure by spreading the word about Mito and continue to pray for those suffering with this disease.
God bless,
