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!

Monday, April 11, 2011

We're home!!

Here's the (sort of) abridged version of the last few days!

We're back in Princeton, safe and sound.  God has been so good and we are so grateful to all those who helped us along our journey.  For now, we're back home and getting back into some semblance of a schedule and trying to start some school again.  We're also just enjoying being in once place!  :)

On Thursday we had a "free day" with nothing much to do, so we went to walk around the Fells (above Medford Square)!  So amazingly beautiful and just what we needed.  We hiked up to the "castle" and then found a couple of swings near the lagoon.  We ended up staying almost 3 hours! 

On the way up...
(Notice new light-up sneakers!!  Thanks, Chalifouxs!)

At the top :)

This swing was fun

"Come on, Madre, get on and I'll take your picture!"

But this swing was by far the best--if you pulled back really far you swung out over the water!!

On Friday we headed into Boston bright and early to have the rest of the stitches out under anesthesia.  I was a bit apprehensive about this, due to her not-so-nice reaction to the anesthesia the last time.  But stitches can't stay in forever...  We got into the OR quickly and she seemed to be in good spirits.  I was again able to go all the way in with her and hold her as they gave her the "happy gas" before putting the IV in, which she had little trouble with, even smiling as she walked in to the ORs.  The anesthesiologists, who were so wonderful, tried a different combo of meds in hopes of avoiding the nausea and vomiting she had last time and that part was successful, which was great. 

She was in and out in about 30 mins and I was quickly called up to the recovery room, where I found her crying. hard.  Those of you who know her know that she's a pretty happy-go-lucky kid and rarely cries unless something really hurts or is really scary.  She proceeded to have what I can only describe as a complete freak-out for almost an hour.  It was really heartbreaking to watch--she kicked and cried and flailed and absolutely refused to be comforted or reasoned with.  She was neither totally with it nor totally out of it (she could respond to simple questions with gestures like: "where does it hurt?"--she would point to the IV in her hand).  They tried everything to get her to calm down and come out of it, and said that it's not an uncommon reaction in kids her age--they feel out of control and simply cannot be reasoned with or comforted.  Didn't make it any easier to watch, though!

They tried a couple of tricks but nothing seemed to work and finally the head of anesthesiology came in to help.  He was a wonderful man named Dr. Martin (a coincidence?!) and he took one look at her and said: "she won't get past this until she gets out of this room."  Despite the nurses protests, he had her IV taken out and we dressed her, kicking and screaming, and stood her up on the floor.  He had her walk out the door (still with her eyes closed, still crying!) and walked us to a parent's lounge where there were some couches and a TV.  He put her on his knee in front of the TV, picked out a program (she did finally have her eyes open at this point), then sat her down in a little chair and said: "Sister, would you like some coffee?" !!  Amazing man.  :)  By the time he came back with my coffee she was talking and asking to eat and drink!  It was if she had been saying "I'm done!  Get me out of here!"  And, once we got past the recovery room, she was truly fine!  We were able to leave the hospital less than an hour later, with no nausea or any other problems!   (Whew!)

We went back to Auntie Donna's house for lunch and then hit the road.

Donna, Willy and Deysi

We drove, and drove, and drove.  I now know how you say "Are we there yet?" in Spanish!  She slept a little but was mostly awake and we sang, chatted bored.  :)  We were home by 9pm and I was ready to CRASH!!  She, on the other hand, was happy to giggle at my mother's fuzzy slippers and read to her until almost 10!!  I was already lying down on the mattress near her bed at that point.  :) 

The next morning we were surprised to find all the wonderful cards and gifts that people had sent!  We spent almost an hour going through them all, admiring the pictures and listening to so many people's good wishes and promises of prayers.  We are so extremely grateful for this outpouring of love for Deysi and are sure that she has been recovering more quickly and with much higher spirits because of it!  Thank you all so very much and God bless you for your kindness and love.

And SMILE she did!  :)


Yesterday my sister Beth and her boyfriend, Dan, came for lunch, which was great.  We had a nice time and they were subjected to a few rounds of "Pesque" (Go Fish), Trouble and a Snow White and the 7 Dwarves puzzle.  :)  We also went to the part and played a rousing game of "Fake out" (seated catch while chatting!) and someone small got a ride on someone tall's shoulders!  It was such a nice afternoon.

Here comes Trouble!

Lovely lunch

Cleaning up and getting our picture taken!  :)

Our next trip to the Boston area will be on or about Wednesday of next week, when we have a 1:15pm appointment at Shriner's with Dr. Donelan (her surgeon).  We'll see what he says!

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