Mito What? Mitochondrial Disease and its Impact: One Families’ Story

List: Posted: 01/13/11

Mitochondrial disease is a life-threatening metabolic disorder that affects the body’s ability to convert food into energy. Mitochondria is a separate strand of DNA, which exists in every cell except red blood cells, and is responsible for producing 90% of the body’s energy. Individuals with mitochondrial disease can suffer devastating effects from a simple cold or flu, even death.


I can quote the above paragraph in my sleep. I don’t even have to look up the spelling of “mitochondria” anymore. My adorable twin daughters, Julia & Maya, were diagnosed with mitochondrial encephalomyopathy on April 23rd, 2009, shortly after their 4th birthday. I have become a different person since the moment I received that email. Yes, an email.

 

My memorized paragraph says so much and yet so little. It describes what mitochondrial disease is, but not what it is to Julia & Maya. For them, mito takes its toll on a daily basis. Their compromised energy levels hinder everything from growth to body temperature. Maya once lay listless in her crib for over two weeks, barely eating or drinking. She had gained four pounds in that time: a simple growth spurt rendered her incapable of moving for two weeks. My daughters also over-heat very easily. They “wilt” completely because they do not have the energy required to maintain body temperature.

 

What mito means to me is almost impossible to describe. My daughters cannot speak or communicate, because their brains are not getting enough energy. I never know if they can walk from the car to the inside of a store to get into a shopping cart, making it difficult for me to take them anywhere alone. They cannot dress or bath themselves, use utensils, get into the car, or express basic needs. They are not potty-trained. I know that when they become listless, over-tired or over-heated, there is a chance that the energy drain is causing damage to their brains & other organs. I have to constantly monitor heat and excursion to keep them healthy.

 

What mito means to my family is overwhelming financial stress. Julia and Maya require expensive supplements to aid their absorption of nutrients and supply energy. We pay $500 monthly for these supplements, which are not covered by our private insurance or Medicaid. Neither is the tandem wheelchair I need to transport both girls in case of an emergency. Tandem wheelchair pricing starts at $3000. We paid over $10,000 in medical co-pays and deductibles this year alone.

 

But most important is what Julia and Maya mean to me. They are the smiliest little rays of sunshine to ever have walked this earth. They are loved. Dearly, deeply & wholly loved.

 

- Gina Gareau-Clark

Parent Advocate and RARE Blog contributor

 

 

If someone in your family suffers from mito, you are encouraged to visit the Children’s rare Disease Network for further information and support, at www.crdnetwork.org

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