Thankful We Are Not Alone - Guest #6

My next blogger is the mother of one of Elise's very best friends, Megan. She has graciously submitted this piece as a favor to me. Thank you so much, Laura, for sharing!

"I am the proud mother of Megan. She is the prettiest, sweetest, funniest, BRAVEST, & STRONGEST little girl I know. She is now 7 and has been through more in her little life than most adults go through in their entire lifetime! This special little girl has made me a member of the "Mito Mom Club". We, mothers of these precious children, all refer to ourselves as "Mito Moms". It helps us know that we are not alone in our battle of the unknown.

You see, Megan has mitochondrial disease or "Mito" for short. You say, "mito what"? That is exactly what we said when we received her diagnosis back in 2004. Not only had we never heard of it, but we soon found out that it is not only a very serious, progressive, life debilitating disease; also that there are no "proven" therapies. All we could do was treat the symptoms. We give Megan a cocktail of vitamins, medications, and cofactors and pray for the best. There is also no clinic or center to speak of for these disorders and there really is not a whole lot going in research for a cure. Not to mention the lack of awareness. It is hard enough to find out that you have a special needs child, a sick child, but then to learn that you are virtually all alone in the medical world...

It is very hard to believe that they are not trying harder to find answers to the disease when it is linked to so many other diseases. Mito has now been linked to Autism, Parkinson's, Huntington's, and Alzheimer's. You see Mito is also a neurodegenerative disease so we do not know how slow or how fast her progression will be or what this horrible disease will do to her body. Also more research has been showing that it will not be so rare after all...1 in 4000 births will develop a mitochondrial disease by the age of 10. Yes, it can begin later in childhood, even as an adult!

Mitochondrial disease is the result of failures of the mitochondria, the power house of the cell. Mitochondria as 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. These diseases appear to cause the most damage to the cells of the brain, heart, liver, skeletal muscles, kidney, and the endocrine and respiratory systems. This disease also affects each child differently so there is so much unknown about Megan's future. There is no way to predict how or when the progression will take place. We honestly have no idea what is ahead of us.

Megan currently struggles with seizures, central apnea, cognitive delays, GERD, asthma, muscle weakness, speech disorder, movement disorder, atypical autism, balance issues, and a weakened immune system. She cannot eat or drink anything by mouth. She relies on a g-tube for all of her nutrition. She will occasionally eat some yogurt or pudding, maybe an M&M on a good day. The central apnea is the scariest of her issues. Her brain no longer controls her breathing like it should. She will just stop breathing throughout the day and night. During the day you will hear her hyperventilate and that is why...she is catching her breath. She must wear O2 and an apnea monitor at night to ensure her safety. Poor Megan must sleep every night with tubes all around her. Her life...It simply is not fair! I would take her disease from her in a second if I could, but I can't. It pains me to know I can't do anything, but be her advocate, her caregiver, her mommy, and pray, pray, pray!!!

With all her struggles, test, surgeries, illnesses, and fatigue, she is amazing! She is the BRAVEST and STRONGEST person I have ever known. She goes through horrible pain and struggles daily, but you'd never know it. She always has a smile on her face. She is the happiest little girl and loves everyone with all of her heart! She teaches the world around her what REALLY matters in life. Thank you, God, for trusting us with the precious gift of her life. What a blessing she is to us!!"