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!

Wednesday, April 20, 2011


Just a quick post...we just arrived and we're ready to sleep, but here's the latest news:

Dr. Donelan says her face looks good...he found 6 more stitches that had managed to not come out on the first try and which he had to take out (not fun but over pretty quickly and without anesthesia, which we love!!)...he also said that the effects of this procedure will only be fully noticeable after 6 months to a year (as in: the small spots that they operated on will actually affect many other parts of her face, but these secondary effects will only begin to show up after months!), so he doesn't want to touch the face for at least another year (!!)...her hand would need a full two months to do and heal, but we aren't scheduled for surgery at this point, first of all because we would have to get back on a waiting list and second of all because I'm not ready to put her through two full months in and out of the hospital with skin grafts and lots of stitches right after finishing this first procedure!  We'll leave the hand for a later date, possibly connected with any more work that has to be done on the face but perhaps seperately or not at all (I think we should also take her opinion into account regarding her hand and whether she feels that it's worth it to go through all that!).

So, the abridged version:
1. We're done for now, other than a final follow-up in Boston on May 18th!
2. Further procedures will not even be considered for at least a year, at which point we might get back on the waiting list but would not make it to a surgery date for months after that! 
3. Now we have a month and a half to fun things like visit people and places, learn how to read and ride a bike, and play!  :)

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