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, April 5, 2011

More wonderful visits

We continue to be blessed by so many wonderful people who have supported us on our journey and who even let us come and invade their homes!!  Our post-op with Dr. Donelan at Shriner's is tomorrow (Wednesday) at 2:30pm and I think I'll have more concrete info regarding what the next step(s) will be for Deysi, but for now we're just enjoying our friends and the fun things we are able to do with them!

After our adventures in the Haverhill snow, Olivia was kind enough to take us bowling (um, glow bowling to be exact!) and man, did she love that!  By the second game she was just sitting down on the floor every time after bowling but couldn't bear to leave when that game was done (despite her exhaustion and the fact that it was almost 10pm!).  The next day my legs were so sore (from bowling--you must be kidding me!!) but now I feel a little less lame since I've discovered that both Olivia and Deysi were sore as well! 

Nice shoes there, sister!

Can you tell I'm loving this??!!

Winner of game #2

We got a little silly...

...and had a great time!  Thanks, Olivia, we love you!

We spent the weekend with our dear friends Gretchen and Buddy Baker-Smith, who provided non-stop activity for us both and much-needed fellowship and company for me!  We had a wonderful time with "Chin" and "Body" (Deysi's best attempts at their names!) and when we left she almost immediately asked when we would be going back.  Don't worry, kid, my sentiments exactly.  :)

 Interactive climbing (as in, "I'll climb and you come find me, Chin!")

The carousel at the zoo--what fun!

Shootin' some hoops (can you tell we love the ball, Olivia?)

Playing at the community house after Meeting

 An intense game of badminton (and yes, I did have to look that one up to be sure of the spelling!!) on a very windy afternoon

After a lovely walk on the beach (this was the outtake with no bunny ears) :)

My absolute favorite--"play it again, Chin!"

Now we're having a wonderful visit with the Chalifoux family (Olivia's parents) in Spencer, Mass.  We arrived yesterday afternoon and went to the senior center where Robin (Olivia's mother) works to meet the wonderful ladies that made sock monkeys for our girls at the hogar last year.  Deysi got a very special sock monkey all to herself (which I somehow neglected to take a photo of...) and we shared craft time with a group of the residents who participate in the Grandparents Program (in which they form special relationships with young people from the local school).  It was a lovely afternoon.  This morning we took a walk in the woodsy area behind their house and checked out a park nearby (of course!).  It's a bit rainy so we're enjoying the finer things in life--Barbie movies and Cherry Coke.  :)

Working on her butterfly wings with some help from Pat

Some of the other residents and their friends helping with the art project

Checkin' out the view from the tree house

Styling in her boots by the icy snow

Playing...whatever that game is called.  :)

Robin, kitty and Anna taken by Ms. Aguilar (if you look closely you can see the flower stickers that she stuck all over our faces--aren't we elegant?)

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