But those who trust in the Lord will find new strength.
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Welcome to our The Kocourek Family Web Page. It has been provided to keep people updated about our special daughters. (pictured Kristen and her niece Gianna)
Annalies and Kristen have a Primary Mitochondrial disease and consequently, many secondary problems to deal with.
Quote from UMDF: "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. 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."
Kristen also has a diagnosis of Congenital Central Hypoventilation Syndrome (CCHS). CCHS CCHS, Congenital Central Hypoventilation Syndrome, is a disorder of the central nervous system in which the autonomic control of breathing is absent or impaired. A CCHS child's respiratory response to low blood oxygen saturation (hypoxia) or to CO2 retention (hypercapnia) is typically sluggish during awake hours and absent (to varying degrees) during sleep and serious illness or stress.
While most CCHS children breath adequately, though shallowly, while awake, they do require observation for their respiratory status, and, they require mechanical ventilation for sleep or illness. Yet while the health issues initially appear daunting, with appropriate home care, family support, and careful medical supervision, these children can lead fulfilling and productive, near-normal lives.
God has blessed us richly not only with our thriving children but also with precious supportive friends and family like you! Thank you for your interest in our journey.
Our lives revolve around the care of our children. We currently need your help to pay for the expensive mitochondrial disease cocktail supplements, uncovered medical expenses, travel for medical care and equipment for Annalies and Kristen. Currently those expenses are NOT covered by our insurance or Medicaid.
We don't want to be competing with other families for donations, but there are so many kids who need help. What does that say about our society? Evidently, there isn't enough assistance to provide what families actually need during a medical crisis. Anyway, we find ourselves in a position where we need many people offer or volunteering to help us.
In thinking about tragedy and sadness, I am thankful to say; in those places is also compassion and love. I think compassion is one of human's greatest gifts. It can spread like wild fire and affect everyone it touches. I'm thankful because this website has shown me the compassion living in everyday circumstances and in ordinary people. I really do treasure it. We really appreciate any help you can give for our girls with the overwhelming medical bills.
A fund has been set up to assist our family. For information regarding ways you might assist our family, please contact us by email. Thank you.
Happy mail welcomed: The Kocourek Family PO Box 753 Worth, IL 60482
Sunday, May 12, 2013 3:08 PM CDT
Today I’m thinking of all of the Mothers and special needs parents I know. Especially those parenting children I cry for and cheer for as if they were my own. Our children are different ages and genders and have different needs but none of that matters. In my heart we are all family. Many have helped me get through those all too frequent dark days. I can remember the words you said or wrote. They were simple and warm and beautiful. “I get it.” “Me too.” “Hang in there.” I could feel some of you lacing your fingers through mine and I could feel the prayers and hugs. My tears dried and I no longer felt alone. Just knowing you are out there and just knowing that you have had days like this helped me to be strong. Some days, I my heart clings to the lyrics from the song Somewhere Out There by Linda Ronstadt and James Ingram. “And even though I know how very far apart we are it helps to think we might be wishing on the same bright star. And when the night wind starts to sing a lonesome lullaby it helps to think we're sleeping underneath the same big sky.” To all of my family and friends, thank you all so much for opening up your hearts and lives to me. Knowing and/or finding you has absolutely been one of the best things that’s happened in my life as I continue to walk a most extraordinary, atypical journey as a mom and grandmother. I want you all to know how much you mean to me. Happy Mother’s Day to the amazing women in my life.
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