I’ve enjoyed photographing some beautiful children lately…I love it…it makes my heart sing to capture the inner and physical beauty of these children. I love seeing their parents eyes dance with delight when I ask them if I can photograph them!!! I have a lot more photos from our CornFest celebration and today I want to do a little different kind of post. It will have lots more information than just my usual photos and I hope and pray that you will take the time to look at this beautiful child and her phenomenal family.
Mayci Shea will celebrate her tenth birthday on October 24th and I’m hoping that she has a wonderful birthday…I’ll link to her webpage so all of you can read about this beautiful child of God!!!
At CornFest Mayci’s family had a booth selling t-shirts (which were so cute)…here is her Granddaddy holding her…
Beautiful Mayci was born with a rare mitochondrial disorder…here is some info about her from her webpage
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”.
Mayci has her own website!!!
Who couldn’t love an aunt who dresses like this and paints faces to make money for your care!!! I think this lady is amazing!!!
Mayci’s Grandmother told me about Mayci learning to stand up with just a little help from her Mom… photos here http://www.westtennesseecares.org/?p=302
Miracles Do Happen
PS Mayci’s Mom and Grandmother were also there but somehow I failed to get photos of them…
Mary @ Little Red House
Susan @ Between Naps On The Porch
and Claudia @ Dippity Road