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Asi and Pooh Bear 
Asenath Abigail Klein, born 3-3-00, and Zipporrah Hope Klein, born 10-21-03 both have ATP1A2 Familial Hemiplegic Migraine (FHM) and a probable Mitochondrial Disorder. Asenath also deals with post CNS Vasculitis and currently has four narrow arteries in her brain. Both girls have had so much to deal with in their lives but are amazing and determined little girls. We hope you will visit us frequently to keep updated on their health and to also see updated photos, sign their guest books, and visit the links provided to learn more about Mito and please visit their siblings' sites at www.caringbridge.org/visit/joeyklein www.caringbridge.org/visit/christinaklein and www.caringbridge.org/visit/Mariannak. Please also visit http://www.freewebs.com/growingupmitodisorderinfo/ to learn more about Mito in a practical look from a parents view.
Many of our family members (Leah, Rachael, Asenath, Zipporrah, and myself-their mom, have been diagnosed with a genetic condition known as ATP1A2 Familial Hemiplegic Migraine. This condition is an autosomal dominant classical aura migraine subtype affecting less than 25% of FHM affected people and is caused by mutations in the Na+/K+-ATPase gene ATP1A2. It typically includes alternating hemiparesis/hemiplegia, seizures, coma, altered consciousness, gaze evoked nystagmus, ataxia, dizziness and/or vertigo, loss of balance, confusion, eye problems, temp regulation problems, cyclic vomiting, abdominal migraines, cognitive changes, loss of memory, recall and processing problems, cognitive and developmental delays, motor planning problems, muscle weakness, pain, hypotonia, spasticity, fatigue, and much more. The condition is not just a migraine headache condition but a life-altering, life-endangering condition due to the stroke, seizure, and coma tendancies. It has affected my children in ways I never dreamed something could do.
Mitochondrial disease is a chronic, genetic disorder that occurs when the mitochondria of the cell fails to produce enough energy for cell or organ function. Mitochondria are tiny organelles found in almost every cell in the body. They are known as the "powerhouse of the cell." They are responsible for creating more than 90% of your cellular energy. They are necessary in the body to sustain life and support growth. They are composed of tiny packages of enzymes that turn nutrients into cellular energy.
Mitochondrial failure causes cell injury that leads to cell death. When multiple organ cells die there is organ failure. Other symptoms can be loss of muscle coordination, muscle weakness, neurological problems, seizures, visual and/or hearing problems, developmental delays, learning disabilities, heart, liver or kidney disease, gastrointestinal disorders, severe constipation, diabetes, increased risk of infection, thyroid and/or adrenal dysfunction, autonomic dysfunction, neuropsychological changes characterized by confusion, disorientation and memory loss. (This definition was taken from the Mitoaction.org website)
DREAMS CONFORMED TO HIS WILL
Dreams within me being torn in two
The unknown scares me and I cry out to God with tears
I fight anger and depression yet know I cannot find fault
In the one who made me and gave this very life to me
How can I expect something I do not deserve yet only desire?
How do I complain when His will is not my own?
I become humble in His sight and plead forgiveness
For I stepped out of my bounds with my demanding desires
Yet I continue to hope for His hand upon the situation
To fulfill the dimming dream within
And now I cling to His sovereignty
Knowing He does no wrong and has a reason
Still unknown to me and even still afraid
Yet my fears are calmed to know He cares
And knows my needs and desires better than even I know them myself
So I stand and trust in His plans and pray for patience and peace
Knowing these things are His to grant me
He who is above all and rules over all
My glorious God and King, Jesus Christ
Written by Darla Klein
�TIME FOR US�
My friends and I are parents of children with life-threatening special needs�
Do you know what it is like?
There have been days when we wished we could pull the covers over our heads and pretend things were different and to chose not to think about what the future might bring
There are times when we brace ourselves for the test results we knew were coming from the doctor in front of us, yet we begged it not to be true
These are the instances that take our breath away and we sit speechless not knowing what to say, so we pray silently that God would see us through, giving us strength we know we don�t have without Him
There are breaths that come out in forced rhythms as we frantically fight to hold on through terrifying moments that you can�t possibly understand, nor often can we
There are frames of our lives that define us because these were the most painful ones; moments that changed us forever
There were minutes where we were unsure of our decisions and yet thinking back, what else could we have done?
There are hours where we sit with thermometer and phone in hand, as we anxiously await the doctor�s plan
There are months perhaps where we found ourselves confined to a room wishing to be home but knowing the hospital is where we needed to be
There are fragments where we feel hope when our child seems well, yet we keep wondering when things will crumble around us again
There were periods that we clung to you; our spouse, a friend, support group or relative to help us get through
There are seconds that we wished didn�t exist and yet did, where each breath we heard feels like the last and we begged God might grant us a little more time
There were precious moments when the smile before us made us cry and we wouldn�t change a thing knowing the child before us was made just as they were and just for us
There were lives that brought us joy just because they were our own and just because we loved them, where every little accomplishment to you might seem absurd but to us meant the world
There was a juncture where we have had to choose whether to live in fear or to choose to live, hard though it certainly is, and to focus on this present moment rather than the ones to come or upon those left behind
There is a future for each of us, no matter what may have past, where we will continue to breathe and live, hopefully gaining wisdom and understanding from all we have had to sacrifice
There is a past, although painful, that one day we will remember and wish we could live once again today
And we had a life, and still more to come, how do you think we will each choose to live it today?
This lifetime, filled with joys, fears, and a vast amount of unknowns, is our one lifetime and I know each one of us will cherish every single moment of time� How about you?
Each one of these emotions expressed is how we each feel all at the same time, all the time, though hard for you to understand�
Please, please take a moment of YOUR time to pray for US today!!!
Written by Darla J Klein
February 6, 2008
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Pondering upon reality
Mind bending to unrealistic conclusions
To things that ought not be
But seem to be occurring all around me
Fears abound within me
I lose my grip and begin to fall
To places of depression and bewilderment
To places I never thought to be
Grasping to some form of hope
Not knowing where the strength is from
Yet desperately I call out
To the one who seems to embrace me
Now understanding
Gaining peace and hope within
It is God who leads me into the unknown
Helping me face another should be in my reality
Realization of reality
Which is not what I had planned
But in His loving sovereignty
No other place I ought to be
For with Him lies eternity
This earth my only temporal home
Even though storms rage around me
Some day I will be forever home
For in Him lies true reality
Planned and guided alone by Him
Lovingly He maps out our past, present, and futures
In a way we cannot often understand
Yet how can I question His plans
Nor be angry for what has been
I would not give a moment back
For even the hard moments is a part of who I have become
What I would not be without the hard realities
Through the moments of heartache and sorrow
Stronger and more able to understand
The many others around me living another should be reality
Written by Darla Klein 01/02/08
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Journal
Saturday, April 4, 2009 0:10 AM CDT I recently changed to the new caringbridge page so please visit the girls at www.caringbridge.org/visit/asenathandzipporrahklein for further updates. I still may occasionally post here but the main updates will be kept at the new site. Thanks everyone!
Read Journal History
Links: http://umdf.com Mitochondrial Disorder website
http://www.freewebs.com/growingupmitodisorderinfo/ GUMDI Growing Up Mitochondrial, Disease Info
http://www.mitoaction.org Mitochondrial Disorder info/fundraising/learning site
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