By Linnea Dengah, mom to Areli, Mitochondrial Disease Complex III Deficiency.
Every individual with mito is unique in their disease, no two are the same. The ugly face of mito has many characteristics, each one individual to its' keeper. Which face of mito have you become accustom to? What does mito mean to you?
I am a mother to a 10 month old girl, Areli, diagnosed with complex III deficiency and for me,
Mito means SCARED. When that diagnosis was uttered to me in that sterile, clinical office one cold winter day I had no idea what it meant. So I did just as any other person facing a diagnosis would do- turned to google. Out of the thousands of words I read, obsessed over, two phrases etched themselves into my brain, "incurable, progressive disease" and "many die in early childhood, but some have survived longer". As a mother, it is hard to think of any other phrase scarier than those when pertaining to your child.
Mito means UNKNOWN. Not knowing what the future may hold is the hardest for me. Whether your lucky enough to have a definitive diagnosis or only 'suspected mito', the future of your health is unknown. No one knows the course my daughters mito will take. No one knows which birthday will be the last. No one knows if she will experience the love of having her own children. No one knows if she will live a long fulfilled life. No one knows. The lives of our mito children are delicate, everyday is a gift as we voyage through the unknown.
Mito means SADNESS. I would be lying if I said this diagnosis wasn't devastating. I am sad for my baby when she goes through hospital stays or procedures or countless blood draws. I am sad it has been hard to enjoy her infancy because she has spent the majority of it crying. I am sad for what she will have to endure in the future. I am sad our lives are different than I imagined them to be. I am sad so many children/adults have to live with the ugly face of mito. I am sad so many children have been taken by the ugly face of mito....
........... But I think it is important to note that to me,
Mito also means FRIENDSHIP. Without being handed this diagnosis we would not have met the people and families we have. The instant connection and sense of belonging is tangible. The amount of support that radiates from the mito community is substantial.
Mito also means STRENGTH. The lack of energy in my daughters body has been replaced with an abundance of strength. Not only has she taught her family to be strong, but she has shown us she will fight and fight hard. She won't live within the boundaries of her disease but instead break past them and pave her own road outside her disease.
Mito also means RESEARCH. This is the key to finding a cure. To help, our family is part of the Mitochondrial Hepatopathies Research Study. I am hoping by following Areli's life and journey she can help doctors and researchers find a cure.
Mito also means GRATITUDE. Sometimes it takes something horrible to make you appreciate the good. Each day we slow down, appreciate the small things and be grateful for what we have right now, at this moment, because tomorrow isn't guaranteed and today is beautiful.
So, although mito is rearing its ugly face at me, if I look real close, I can see some loveliness behind its grisly eyes.
What does mito mean to you?
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Our Journey to Mito
By: Linnea Dengah
Our journey begins on June 5, 2012 at 2:56 pm as our new baby girl, Areli Rose took her first breath. She is little sister to Leilani (now 3 yrs) and daughter to myself, Linnea and father, Hayes. She was a feisty little girl, screaming her pink little buns off! She was seemingly healthy and strong, besides a little bit of jaundice and we were sent home as a new family of four.
The days and weeks following her birth, her jaundice levels continued to rise despite our efforts to get rid of it using the sun. She was like a normal newborn, other than her yellow skin and eyes, until one day at 8 weeks old she seemed lethargic, so I took her to the ER. We were admitted and this marked the beginning of our journey to a diagnosis. During the hospital stay and the months after, Areli endured countless blood draws, MRIs, ultrasounds, and a liver biopsy. She had elevated liver enzymes and a very fatty liver, but other wise every other test would come back normal. After months of testing yielding no answers our doctor referred us to Children's Hospital. Although Areli was clinically thriving, she began to vomit daily, and have crying spells for hours everyday. She was not a happy baby and her development seem to stall at a standstill. We were desperate to give a name to what was attacking her body. After ER visits for high fever and another biopsy, at 9 months, she was diagnosed with Mitochondrial Disease Complex III Deficiency.
Today at 10 months Areli's physical development is normal, but she is in early intervention speech therapy. Her liver continues to decline and she is in stage 1 liver failure. She also is being monitored later this month for possible seizure activity. We are awaiting gene testing to try to find a specific mutation which should give us a better idea of a prognosis. We are also part of a Mitochondrial Hepatopathies Research Study and they will follow Areli through the next 5 years of her life. I realize we are lucky to have a diagnosis at such an early age and within a (relatively) short amount of time. This journey has catapulted me into a passion to raise awareness and share our story in hopes we can help the mito community- parents, patients and doctors.
