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Nov 30

charleston elves wednesday

by Santa in Inspiration

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Ho Ho Ho Happy Holidays

We have all heard about Black Friday and Internet Monday. Well, I "Santa" claim Wednesday as Charleston Elves Wednesday. This is when the world visits the www.charlestonelves.org website, signs-up to become an elf and adopts a needy child for the holiday season.

There are only 18 children left for adoption. Below is the story of Chinia one of many deserving children on my list. Don't be left out of this historic day "Charleston Elves Wednesday" click on the following link www.charlestonelves.org to become an Elf today.   

Chinia was born with slow heart rate, reflux, congenital immune deficiency-transit of infancy, with a slit eye, and sleep apnea.  She was treated by Dr. Trant for heart in Florence.  She stayed on a monitor for around 14 months.  Between the ages of 3 to 4 years she was seen for immune problems and eye conditions.

She was diagnosed with Glucomia during this time. Chinia has always been sick with multiple types of infections and viruses.  She is a well adjusted child, has the most manners of any small child and a caring and compassionate nature about her.  She is very sweet and loving.  She takes care of all her toys, clothes and personal belongings like a grown person would.  She gets along well with other children.  She is shy, quiet and reserved.  She loves to watch satellite programs, DVDs and VHS tapes.  She loves games, crafts, and coloring.  She has spent a lot of time in her wheelchair, on the couch or in bed last few years due to her multiple problems. 

Chinia was seen at Genetic Center in Columbia where they told parents she has a condition called Axenfeid-Relgers Syndrome which covers her eyes, ears, navel, her eating patterns and her mannerisms which all of this explains a lot about Chinia to her parents.  Chinia was bruising easily.  The bruising stayed for extended periods.  She was falling a lot, falling for no reason, and could not keep her balance.  She was sleeping for very long periods.  During this time Chinia was falling asleep even inside the play equipment in the kiddie playrooms.  We thought she was getting tired and sleepy.  We did not know she was experiencing seizures.  On Friday, January 30th 2004, Sally the receptionist called mother, told her Chinia has brain cancer she needs brain cancer tumor surgery ASAP.  MRI studies shows she has medulloblastoma , her tumor is the size and shape of a navel orange.   The surgery is supposed to last 4 ½ hours, however it lasted almost 8.  Upon completion, Drs. Came out and talked with parents.  They said they were able to remove the big large mass but they could not pick out the pieces that are intertwined in her brain stem, it would be fatal.  On February 11th, Chinia arrives at MUSC in Charleston.  On February 12th, parents are told second surgery to be done at MUSC this morning.  McLeods has let spinal fluid leak out of her head and this is very dangerous.  Chinia has six weeks radiation, oral surgery, and 94 chemos to date. 

She has fought a good fight all through this.  She has suffered continuously but she keeps her spirits up and depends on God to help her get through the pain and to make it each day.  She knows God in her heart and he is the one she depends on for help.  Chinia has had so many hospitalizations along with many out patient procedures to date.  She has Medulloblastoma, Axenfeid-Relgiers Syndrome, Adrenal Suppression, Hypertension, 5 different seizure disorders, failure to thrive, hypothyroidism, irreversible kidney damage, Congenital Immune Deficiency Syndrome, Vasculitis, and 1 other syndrome.  Her allergies are Amoxicylin, Dexamethasion, Latex, Lorazepam, Megestrol, Septra, Peractin, Decadron, Megace, Miranol, Bactrim, Activan, and toilet tissue. September  26th Chinia suffered a Brain Stem Stroke causing her to have partial paralysis of her right eye and the inability to stand or walk. In spite of all her medical issues Chinia is a happy wonderful child who loves her family and appreciates her many blessings.

Please visit www.charlestonelves.org to see how you can assist Chinia or another Courageous Kidz.

 

 

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