Mayci Shea Hogg was born on Oct. 24th 2000 to Richard and Kristi Hogg, she was a normal beautiful girl that weighed 6lbs 8oz. Doctors said her APGAR score was great. We brought her home to begin our new life with our second daughter. Little did we know,  this “NEW LIFE” would become one amazing journey even before she became 8 years of age.

At 2 months of age we started noticing that Mayci was very fussy and that she could not focus on us. She would turn her head from left to right and her body would make spastic jerking motions. We went to our local physician thinking he would tell us it was COLIC. Unfortunately, our lives changed at that moment. Our Dr. sat us down and told us we had 3 things to rule out. #1 Blindness, #2 Brain Tumor, #3 something of the unknown. He sent us to Lebonheur childrens Medical Center with no Positive conclusions..

This visit began a very long and painful journey. We saw 45 doctors, went to 4 states, and hundreds of test later we sat at a genetics doctor  in Kansas City, MO.  He told us that he thought she might have something called  MITOCHONDRIAL Disease. We were so excited to have someone to give us some type of diagnosis, unfortunately the prognosis was DIM. He stated that out of all the rare cases he had heard of with a mitochondrial disease the prognosis is terminal and they only lived to around  the age of 3.  At that time Mayci was 18 months old. We came back home devastated. He referred us to Dr. John Shoffner at Scottish Rite Children’s Hospital in Atlanta, GA. It took us 3 months to get an appt. We were there for a week and learned what a mitochondrial disease is. A mitochondrial disease is a life threatening disease that can affect all types of the body functions. It can affect vision, hearing, cause  mental retardation, seizures, feeding tubes, breathing machines, organ failure and eventually death. 1 in 4,000 kids can have this and it is a genetic disorder.  The mitochondria are the battery of a cell. If your battery dies down then your body cannot function properly. Your Mitochondria cells are the cells that take the food that you eat and break it down and turn it into energy for your body. We had a muscle biopsy performed in GA and were sent home to wait for another 6 months.

Finally, when Mayci was 18 months old we received a big stack of medical results in the mail.  It was then that we were given a a diagnosis: oxydativephosphorylation disease. This meant that she did test positive for a Mitochondrial disease Complex 1.

For the next 5 and a half years we would take yearly trips to see these specialist in GA just to be told every year that Mayci is somewhat maintaining  herself and that there is no hope or cure. “Take her home and love her”.

During these past years we have had cataracts, a severe seizure disorder, a feeding tube placed, numerous hospital visits because of viral infections and other types of sickness. She has low vision, she cannot walk or talk and we have absolutely no type of communication with her. With all this said, Mayci is still the happiest child ever. She wakes up laughing and goes to bed laughing. God is Great!!

Over the past 6 months her seizure disorder has worsened and her doctor has put her on the maximum dose that will maintain her. He has told us to “keep her comfortable” and that this is the end of our road. Her seizures will become worse and they will eventually kill her.

We did not want this to be the end of our journey. Now God has sent us hope!!! We have been offered a new light and wonderful positive opportunities. We have found HBOT or Hyperbaric Oxygen Therapy and this is a new found hope for us. We were not ready to give up the fight. We are now on a new and great journey to Fitchburg, WI, (www.wisconsinhyperbarics.com ) to see if we can have positive results like another little girl, Grace. Grace was diagnosed with a Mitochondrial disorder.  She was blind, could not walk, talk, or communicate. She was in a vegatative state, had a  feeding tube and severe seizure disorder. She had no hope either until her brave mother found HBOT therapy. Now at the age of 8, Grace can walk, talk, see, and comprehend.  She has no seizures and no feeding tube. The only thing her mother changed is adding HBOT  to her precious dying baby girl. GOD IS GOOD!!

Thanks for taking the time to read about Mayci’s battle with this rare disease and keeping the Hogg Family in your prayers.  We are wanting to try to go back this summer and to help others go as well.