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!

Saturday, March 1, 2014

Back in Boston and PT

We had our appointment with the surgeon on Wednesday and he was...less than pleased with Deysi's range of motion and flexibility in her left hand (the one with the skin graft).  So...we're up in Winchester and enjoying some extended visiting time with our dear friends the Blacks, who are kindly putting us up as we are introduced to the new and not-so-fun, but really not-so-terrible, world of physical therapy.

Deysi is absolutely loving everything about this particular trip: Jill and Ben, their three adorable kids, their two fun-loving dogs, the Science Museum...everything, that is, except the physical therapy, which is why we are here for so many days in a row in the first place!  But it gets a little better every day, as her hand gets used to being used again, and we are scheduled for our last visit on Tuesday, which is AFTER the big snow storm set to fly up the east coast AGAIN on Monday (whew!).

We were able to make another brief stop at Tufts University, my alma mater, for a delicious lunch with my thesis advisor, Prof. Jan Pechenik.  On our way to Boston Ave., we stopped by the newly-installed medallion celebrating the Jackson Jills 50th Anniversary (I sang with the Jills in college, as did, appropriately enough, our lovely hostess Jill!).

We have now also confirmed our flights back to Bolivia: we leave Philly on the 17th and arrive on the 18th in the afternoon.  Between now and then: many last visits with loved ones, one or two more trips to Boston, a new pressure glove to be worn from now through August (!) and...someone's 11th birthday!

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