Rheana C. - Quilt Finished in 2007
Born: May 5, 2002
Illness: Mitochondrial Encephalmyopathy, anemia, faiure to thrive, short stature, dysmotility, feeding intolerance, seizures, g tube and j tube placed surgically, lesion on brain, peripherial nueropathy, decaying teeth, hearing loss, hypoglycemia...
A Thank-You from Rheana's Family!
Written on August 4, 2007
Hello, I waned to let you know what an honor it is for my sweet little girl to have such a wonderful piece of love from all over the world. Her eyes were so big when she saw her quilt she hugged it and says all mine. I said yes mam it is all for you and I read her each of the squares and told her how much so many people loved her. She sleeps under her quilt all the time and loves it more than her old blankie. Thanks for the amazing job you all did. Words cannot express what it means to my sweet little girl and our family. It is something that we will get to have forever and remember the love it took to create it. Thank you from the depths of my heart I can not thank you enough.
As for her parents, being hand selected by God is a great honor to have a special child that is differently abled. Knowing that there are so many people out there that care about how my little angel feels and wishes her better means the world. With out all the love, support, and kindness of strangers I do not know where we would be today. Prayers all over the world I know have helped my little girl. So I cannot say thank you enough This is so emotionally overwhelming.
May God bless you all.
Heather and Rheana
Rheana's Story
Written by Rheana's mom Heather in July 2006
Rheana was born May 5th 2002 to her proud parents Shannon and Heather, and big sister Morgan, of Georgia. Rheana was born to us two months premature on a very stormy weekend. Rheana is a beautiful child with a glow to her face that was God’s design to steal hearts!
4 year old Rheana (aka “Nonnie”) suffers from the affects of Mitochondrial Disease, in all probability since she was two weeks old. The diagnosis was confirmed when she was 14 months.
This disease causes her to have several health related problems and reactions. To name just a few: poor growth, short stature, failure to thrive, lactic academia, disautonomia, low blood sugar, severe asthma, dysmotility, seizure disorder, myclonic jerks, muscle pain, weakness, decay of teeth and ketosis. She is j tube dependant. That is just to name a few of her issues.
Due to Rheana’s conditions, when any food substance is placed into her g tube, her body reacts to vomit what ever went in the tube. Rheana gets no nutrition in her g-tube, it is all fed through her j tube. Rheana was t.p.n. dependant for ten months until one of many life threatening infections changed her life in January of 2006. She has the J-tube surgically placed in the later part of that month and released in February.
When Rheana came into this world it was by emergency c-section. She had at least 6 different conditions diagnosed wrong with her... sepsis, metabolic acidosis, respiratory distress, failure to thrive, lactic acidosis, meconium aspiration and oxygen depravation as well. She was placed on life support.
Rheana was not expected to have lived beyond her first day in this world, but by the grace of God she did! Then at 2 weeks old she was rushed to Children's Hospital at Scottish Rite because of seizures. The doctors again said she would not come home.
That is when the real journey began...
At 12 months old Rheana was not developing and thriving the way she should have. She was still in and out of the hospital on a regular basis, weighing a mere 10lbs and only 20 inches long (as big as most new born babies now days).
At 14 months old the doctors decided to do a muscle biopsy. This biopsy confirmed the Mitochondrial Disease was ravishing her little life. We were devastated!
In all there is much more we could tell you that happened negatively on a medical basis in Rheana's little life, but we want to focus on the positive. The positives are: yes, unfortunately, she knows nothing else but hospitals, doctors, feeding tubes, emergency room visits, set backs from surgeries and continued sickness... but the most important thing is that she is alive!!! Again let us say "she is alive!"
Rheana is currently attended to by numerous doctors and treated with an arsenal of medications on a daily basis. Her current diagnosis is Mitochondrial Disease Multi-system Disorder. She has seizures, rotten teeth, low muscle tone, acidosis issues, small stature, mild delays, hypoglycemia, anemia, TPN dependent, dysmotility, autonomic dysfunction, neuro-visceral disorder, shakes a lot and battles feeding line infections constantly. They also discovered a lesion on her brain in August 2004, that *thank God* is not growing!
Now 4 years old, Rheana is a very happy little girl that has touched many hearts and every day teaches us how to be a hero. She is a living vessel of God and she has such a fighting spirit about her that teaches us everyday struggles are petty in comparison to her little life.
It is an absolute Honor to be Rheana's mother and a part of her life. Her father says "being her father is one of the greatest gifts life has to offer". Her big sister, Morgan, says " I love my Nonnie". Morgan is an awesome big sister who is always willing to help out no matter what. It is an honor to also have Morgan in our lives and to be her mother, she is my first! With out her I would not be the mother that I am today. Her daddy says that "Morgan is my big Girl! My first special girl that makes me whole and who I am today".
