I have Mitochondrial Disease (a rare form of Muscular Dystrophy) and at this point, it is believed that Stem Cells are the only potential cure for it...
Most children that get Mito die in childhood. often before age 6 with
most forms of it. 80% of people diagnosed with mito die before age 18. Adult prognosis isn't good for most Mitochondrial
diseases either since they often progress with most forms of it. and
there aren't really treatments for it except giving a patient
vitamins/supplements and for many forms specific diets since it's a
metabolic disease.
I'm afraid stem cell treatments won't be available in time for me because of how rapid my progression is.
Stem Cell Therapy/Treatments are believed to have the potential to treat/cure a variety of diseases including:
¤ Cancer
¤ Type 1 diabetes mellitus
¤ Spinal cord injuries
¤ Muscle damage (Including Muscular Dystrophies)
¤ Heart damage
¤ Deafness
¤ Blindness and vision impairment
¤ ALS (Lou Gehrig's Disease)
¤ ...and many other diseases and conditions...
Having Mito is not like other conditions that are currently "controlled" by medications but can be "cured" by stemcells...
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Mitochondrial diseases result from failures of the mitochondria,
specialized compartments present in every cell of the body except red
blood cells. Mitochondria are responsible for creating more than 90% of
the energy needed by the body to sustain life and support growth. When
they fail, less and less energy is generated within the cell. Cell
injury and even cell death follow. If this process is repeated
throughout the body, whole systems begin to fail, and the life of the
person in whom this is happening is severely compromised. The disease
primarily affects children, but adult onset is becoming more and more
common.
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.
-taken from United Mitochondrial Disease Foundation website
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And here are sites/journals of families of children
living withor that have died of Mitochondrial Diseses. (I believe there
are 40 types of Mito- though often people may be diagnosed with
multiple types). In most cases it is genetic which is why you'll notice
somefamilies with multiple children living with/that have died from
it...
Alper's Disease:
Drew Elliot and McKenna Lynn Olson Drew- 8/27/03 - 8/22/05, McKenna- 3/22/05 - 7/05/06
Leighs Syndrome:
Cameron Mason Wiggins July 5, 2000~July 5, 2001
Elijah Jeramie February 15, 2003- November 25, 2005
Complex 1 and a secondary Long Chain Fatty Acid Oxidation defect
Alexandria
Complex I, III, IV and ANT with secondary FOD's :
Annalies and Kristen Kocourek
Caden Lane Williams
Chloe
Wyatt Cobetto Crouch
Cytochrome C Oxidase Deficiency
Haley Hartman
Mitochondrial Cytopathy/COX Dificiency
Justin K. Brubaker
Maya
Kristen, Stacey & Kieran Preston Kristen died 18th November 1992 at 8 weeks
Mitochondrial Encephalomyopathy
Autumn R. Smith
Patrick Luskey
Joshua Kilpatrick
Mitochondrial Myopathy
Heather died September 16, 2005 a week before her 3rd birthday
Natalie Jean Eacrett December 30th, 1998 - May 6th, 2006
MNGIE (mitochondrial neurogastrointestinal encephalomyopathy):
Kaitlin Vasilich died February 8, 2004 (age 18?)
Jeremy
Undiagnosed Mitochondrial Disorder (most are undiagnosed, they just know they are a mito!)
Zachary and Sam Sam 5/9/97 - 3/3/05, Zachary died November 28, 2007- age 15
Skye Nicole Anastasia December 17,2003 - March 18,2006
Elena
Kayley March 16, 2000 - September 23, 2000
Kira Bekker June 6, 2003 - January 4, 2005
Taryn
Zipporrah & Asenath
Mikaila
Alex
Kirkland Allen Kilbride March 6, 2001-December 2, 2007
Alec January 19, 2004- November 1, 2007 (this family then had a baby girl the day after their son died).
Eliah
Emily, Ashana, and Savanna LeGeyt
Anna Kleckner died August 12, 2004 (baby)
Aspyn Remar Block Nov 14, 2001 - July 15, 2002
Kevin Rhoan Wesdorp
Lianna, Reilly and Tim Thorell
Zach West
Emma Byrne
Hailey & Brenna
Corey & Emma
Brooke Hendley died June 13, 2005
Levi Robert
Hoppe Family- 8 kids diagnosed with a mitochondrial disorder
Kayley's mito angel friends- In Memory of more Mito Kids
Without stem cell treatments, NONE of these children that are still
living with it have a chance at a 'normal' childhood. that is the reality of life with
Mitochondrial Disease- it IS progressive and degenerative... and there are SO many people out there living
with other conditions or diseases that could be helped by stem cells...
like Spinal Cord Injury survivors. They think potentially they would be
able to walk again with stem cell treatment... Please remember this
when looking at your options for political candidates this year and
where they stand on the stem cell issue.
Meet some Mito kids:
Filed under: stem cell research, mitochondrial neurogastrointestinal encephalomyopathy, muscular dystrophy, Complex III, Long Chain Fatty Acid Oxidation, Muscle damage, vision impairment, ANT, Angels, diabetes, stem cell treatments, Blindness, Cytochrome C Oxidase Deficiency, stem cells, Mito Angels, memorials, Complex IV, Complex 1, COX Dificiency, Mitochondrial Myopathy, MNGIE, Mitochondrial Cytopathy, Cancer, Leighs Syndrome, Mitochondrial Disease, Mitochondrial Encephalomyopathy, Lou Gehrig's Disease, stem cell therapy, rest in peace, Alper's Disease, Heart damage, ALS, Spinal Cord Injury, Mito, Deafness
