Hi! My name is Macy and I am 8 years old. I have Mitochondrial Disorder Complex I.
It is a terminal, progressive & incurable disorder, which affects my body's ability to produce the energy neccessary to function my major organs. There is no proven treatment.
I love life!
We are on a mission to save my life & others like me! Please join us to find a cure.
Please read my journal for updates & photos as we go along. Let me tell you my story & a little more about myself! My name is Macy. I am in the third grade but I don't go to school. I am home schooled, so I get educated in my home. I am a strait A student and I love to learn! I love animals. dolphins are my favorite and want to be a veterinarian, chef or artist when I grow up. I love poems, music and collecting! I love cooking, coloring, crafts and art too. My favorite colors are pink and purple. I love to travel and my dream is to travel around the world someday. I love to watch food network. My favorite shows are ace of cakes and iron chef. I also LOVE to eat lol. When I was little, our house burnt and I was injured with smoke inhalation. The good Lord saved us however I became very sick and had a bad seizure. My parents took me to the hospital and I was admitted with RSV. I stayed strong and pulled through it, but continued to have health problems. I was unable to walk correctly and had balance problems so I fell so much. My legs began to cripple. After spending time in hospitals and many tests, I was diagnosed with Cerebral Palsy and Epilepsy. A couple years passed and nothing seemed to help my crippling. I was getting worse and worse, but doctors could not figure out what was wrong with me. They finally sent me to Atlanta for a biopsy and lab tests. I will let my Mom tell you the rest.
Macy was diagnosed with Mitochondrial Disease Complex I. It is a rare terminal disease. Only a handful of cases have ever been diagnosed. Most children go deaf & blind early in age. Most do not live past the age of 9. We have faith that the Lord will see to her long past 9! Her body does not produce the energy necessary to function the major organs & muscles therefore, they begin to shut down. It also causes a condition known as Lactate Acidosis, which is where lactate or toxins build up in the body and acts like a poison, slowly poisoning over time. There is no known cure. We were devastated and our world was ripped apart! When we were told that Macy had this, we didn't realize how bad it actually was until the doctor said terminal and my heart broke that very moment! I felt like someone had ripped it out of my chest. I can't even express the pain I felt hearing this word! Then, we are told that it is progressive, incurable and there is no treatment! My world fell apart that very moment and nothing has been the same since. "Macy is my everything, my world and I knew that I could not make it without her!" Time went by and I decided that there was no way that I was going to let my baby slip away. We prayed and prayed. We had thousands of people praying for her. We had her prayed for at church. I have a strong faith in prayer and in the dear Lord, so I laid her at his feet and prayed for a miracle. Although I laid this in the Lord's hands, I felt that I needed to do my part as well. I was determined to do everything in my power to save her. I went online and searched all night, every night. I would spend my days with her, and my nights researching. I managed maybe two hours sleep if I was lucky. This disorder was so new, that there were only a hand full of doctors in the world that knew very much about it. I finally found one. Cleveland Clinic Foundation and Dr. Bruce Cohen. We had our first appointment with him Jan 30th. He ran some tests and is in the process of reviewing her history and awaiting the results of the gene tests.
We are not giving up hope and our visit was encouraging but we need all the prayers we can get. We will have more news in the coming weeks. If you are reading this, I beg you to please pray and pass on the story to others to pray. I know the power of prayer and I have faith in the Lord and the miracles he can provide. We need a miracle! Macy loves life and lives it to the fullest! She has so much left to accomplish in this world and I want to see her grow up. She is such a strong, brave, kind and caring little girl and will just melt your heart. I can't lose my little girl as she is my life, my everything! Please pray for her and pass this on. The power of prayer has no limits! God bless and thank you!