Maria Deysi's Story...


Maria Deysi Aguilar was born on March 15th, 2003, in Okinawa, Bolivia (in the department, or state, of Santa Cruz). She is her mother's third child and only girl. When she was three months old, her mother left their dwelling (a wooden structure with a tarp roof) to look for food, leaving Deysi and her two older brothers alone. As it was a cold night, she had left the embers of their cooking fire burning. A stray spark made it up to the tarp, which caught fire and began to melt and drip onto the dirt floor of their home, where Deysi was sleeping, wrapped in a blanket. The only exposed parts of her body (her face and hands) were severely burned by the burning, liquid plastic of the tarp. By the grace of God, Deysi and her mother made it to the city of Santa Cruz (a two-hour drive) and Deysi spent four months in the burn center at the city's childrens hospital. After two skin grafts and many weeks of painful recovery, she was finally released, but after realizing that she was unable to adequately care for her daughter, Deysi's mother chose to place her in the girls orphanage "Hogar Sagrado Corazon" (Sacred Heart Home) in Montero, shortly before Deysi's second birthday.

How is she now?


Deysi is now 10 years old and will start fifth grade in March. She still lives in the childrens home "Hogar Sagrado Corazon" and is well loved by all. She has a sweet disposition and a quick, easy smile. She is doing well in school and is a hard worker, not easily frustrated and generally well behaved. She has been blessed by more frequent visits from her mother and brothers recently and continues to rekindle the bond that she has with them.

Her skin is completely healed (and has been for some time now) but the effects of the burn are still very noticeable. Deysi has never been self-conscious about her differences, but is approaching an age where those differences will start to matter more. In 2014, thanks to the generosity of Shriner's Children’s Hospital in Boston, and the skill and dedication of their professionals, she has undergone a second surgical procedure (on January 27th). This most recent surgery removed the nail bed of the thickened fingernail on her left hand and grafted skin from her leg onto the back of her left hand, allowing more movement in her fingers and replacing a portion of the scarred skin with her own healthy skin. She has also undergone the first of a series of laser procedures to gradually lighten the areas of (darker) grafted skin on her face. We are so grateful to Shriner's Hospital and to all those who have contributed to allow this second trip to become a reality!

Tuesday, March 29, 2011

We're out!!!

First of all, thanks to our lovely guest blogger, Beth, for keeping everyone in the loop. :)

I'm happy to report that we are out of the hospital (!!!) and at my friend Jill's house for a couple of days to rest up.  I'll sum up how it went along with the pictures but let me just say that we are so grateful to the staff at Shriner's who were so incredibly wonderful to us during our stay, and to Dr. Donelan who performed the surgery.  Yesterday was a little rough, after Deysi started really waking up from the anesthesia, but she woke up feeling 100% better this morning (much to my relief!) and, aside from a little pain at the suture sites, she's doing great!  Dr. Donelan decided not to work on her left hand after all, leaving that and the work on the skin grafts on her face for another opportunity, so it really was a minor surgery, for which I was extremely grateful.  I would much rather do this little by little and get it right than rush into things and possibly have a negative result or cause her too much pain all at once.  We're scheduled to see Dr. Donelan again on Wednesday (a week from tomorrow) so we'll see what he says, but everything looks great!  Thanks so much to all who have kept Deysi in your prayers and in your hearts, for all of your help that has made this possible, and for those who are letting us invade houses and cars to get to where we need to be and stay a while!  :)

Our last romp in a school playground in Arlington, before heading off to Shriner's on Sunday afternoon

And when Deysi got a hold of the camera, what did she take a picture of?  Chip--I think she's hooked!

Our room

Our VIEW!!

Dinner Sunday night (chicken fingers--yum!)

Showing off our "bling"--made by Deysi with her fun flexy toy.

Last snack before she started fasting at midnight on Sunday night

While I waited...

Right after we came down from the OR

I didn't take any pictures was a pretty crummy day...she slept a lot of it (and looked like the previous picture) and had an upset stomach and head ache and generally felt gross...

We both got a good night's sleep, and this morning she woke up asking for breakfast!  Yay!

After breakfast and a hairwash, we tried out the toys in the amazing toy room...
A fun basketball hand game...

Bowling, anyone? or foozeball...

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