Sunday, September 19, 2010

Beautiful Mayci!!!

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!!!

image At CornFest Mayci’s family had a booth selling t-shirts (which were so cute)…here is her Granddaddy holding her…

image When you sneeze, it just tickles 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”.
 
 
 
imageMayci has her own website!!! 
 
image A photo of the back of Mayci’s t-shirts (her Granddaddy was wearing this one)…
 
image 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!!!
 
image "cuz she cares”
 
image 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…


and Claudia @ Dippity Road

17 comments:

  1. Wonderful post for Mayci. She is a beautiful little girl, who seems very strong and is a fighter. I will say a prayer for her and wish Mayci many more Happy Birthdays.

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  2. beautiful children and mayci is one of them
    sounds like she has a great loving, supportive family and community as well.

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  3. Oh Becky, what a beautiful post about a beautiful little girl.
    I will pray for Mayci and her family...... she is a miracle..... thanks be to God.

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  4. What a beautiful and wonderful family and story.
    Thanks for sharing and for visiting.
    Sandy

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  5. What a great post. Mayci is a beautiful girl and I am glad she has so much support. Thanks for sharing the story, Becky...Christine

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  6. Hi Becky!! What a wonderful post about this beautiful little girl.!
    Be a sweetie,
    Shelia ;)

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  7. What a sweet post. Such a beautiful little girl and an amazing family. Thanks for telling her story.

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  8. What a beautiful post and a beautiful little girl! What a terrific family!

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  9. Beautiful. This little one has the cutes smile and I do belive in Miracles .
    You will all be in my prayers to night.
    I enjoy your MM .

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  10. What a wonderful post of a very special young lady. She is obviously a fighter with great family support. Thanks for sharing her story with us.

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  11. Becky this is such a beautiful post. It warms my heart to see how much love and support Mayci receives from her family. I have seen many situations where the care and support seems to fall on one parent's shoulders. Thank you for sharing Mayci's story with us. I am going to visit her website later today when I have more time to read it.

    Hugs,
    Tracy

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  12. Sounds like Marci is enjoying time with a wonderful,loving family!

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  13. What a beautiful little girl! Thanks for sharing her story with us.
    blessings,
    ~Holly

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  14. Becky-I am constantly amazed by the faith and courage of children. This little girl has lessons to teach us all. God bless her and the wonderful family chosen to love her. Thanks for sharing this.

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  15. Thanks for sharing Macy's story with us.

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  16. Hi Becky...

    Ahhh...Mayci is just precious! I certainly will be praying for this sweet little girl. I have never heard of this disease. Loved the photos, my friend! Thank you for sharing Mayci's story with us today!!!

    I sure enjoyed your visit, my friend! Thank you so much for coming by and taking a peek at my autumn decor!

    Warmest autumn wishes,
    Chari @Happy To Design

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  17. A lovely post. What an incredible family; you have captured such a wonderful portrayal of love. Thank you for sharing this inspiring story. And thank you also for stopping by for a visit and becoming a follower. (-:

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Tennessee, South, United States
Intense...the best description of living and loving life that I know...without intensity, life is mediocre and without definition...