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!

Sunday, March 9, 2014

There and back again


We loved staying with Jill and Ben and their family, and will be back there again Monday - Wednesday of the coming week...
Deysi with Ryan, their newest addition

Deysi, Avery and Connor

A giant game of connect four!

Playing with a new friend

We also visited the sisters in Cresson, PA, and had a lovely, though short, visit.  Mother General (superior of all the SSCJ sisters in the world!) was visiting from Poland, and we were able to spend some time with her and her secretary, Sr. Sebastiana.

Deysi playing Bingo! with the residents of our home for the elderly, the John Paul II Manor

(l-r: me, Sr. Sebastiana, Mother General, Deysi, Sr. Frances Claire, Sr. Miriam Joseph and Sr. Margaret Mary)


With Sr. Maria and our novices

With Dusty, guardian of our novitiate

In front of our novitiate

Thanks for the donuts, Sr. Claudiana!

You might notice that in the first pictures she is still sporting the hand brace, but the more recent ones show off her new (blue!) pressure glove, which she really loves.  Which is good, because she'll be wearing it for the next 6 months!

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!

Sunday, February 23, 2014

A bit of sunny weather

We were getting a little tired of this...

(and so were Mary and the three Fatima shepherds, apparently!)

...but by the time we were done with getting the stitches out in Boston (and playing the ever-interesting video games in the clinic lobby)... 

...and had enjoyed the Boston Science Museum...

...we drove home to Princeton and got some of this: 


And then last night we were invited to "Never, Never Land" for a very special birthday for an adorable one-year-old Peter Pan named Grant.  (The Laffertys, baby Grant's family, who are such wonderful friends to us and to all of our girls in Bolivia...and boy do they know how to throw a party!) 

Deysi's hand is looking a little better every day (and we can actually see it now because we can remove this new splint when she showers!  hooray!).  We go back to Shriners on Tuesday for a Wednesday afternoon appointment; we'll see how we score on the "caring for a skin graft" scale and what they say the next step will be for her hand.  Meanwhile, a very special little girl named Avery is going to be turning 5 on Tuesday and we get to help her celebrate!  We seem to be turning into party animals...and enjoying it thoroughly! 

Tuesday, February 18, 2014

Princeton...and then Boston, take two.

So...we've been back in Princeton for quite a while now.  Deysi has been recovering nicely and the graft site on the back of her thigh is pretty much totally healed.  She can shower with the help of a plastic bag and an extra set of hands, and can almost dress herself.  Her face is also almost totally healed, though we are continuing to slather it with Vaseline, per doctor's orders, just in case (hence the headband in every picture--it keeps her bangs from turning into a greasy mess).  

Our days have looked a lot like this:

(snow, ice, indoor activities, repeat)

But it does mean we're getting a lot of school work done! 

We had a lovely visit from Melia West, Deysi's baptismal godmother and a former Hogar volunteer, who flew all the way from California to visit!  

snowballs into the Delaware Raritan canal

two beautiful faces

gift shop at the New Jersey Aquarium--the most interesting part was the prank section--
don't ask about the squirty rings or the disappearing ink!

nun...attacked by shark...head first


...and very silly!

We are now back in Boston for stitches removal (tomorrow at 11am).  We came up a day early to avoid being caught in the snow (again) and are currently watching the flakes fall from inside our warm, comfy hotel room (instead of from inside the car, thank Goodness!).  We are hoping that the size of her bandage will at least be a bit smaller (perhaps allowing long-sleeved shirt sleeves on?) and that we will be heading back to Princeton on Thursday at the latest.

Sunday, February 2, 2014

We made it!

Just in time for the Superbowl. :)

Leaving a day early... try to beat the storm that's set to hit the east coast on Monday.  I certainly don't want a repeat of our 12 hour odyssey up here!  Hope to be in Princeton by this evening.  Chau!

Saturday, February 1, 2014

A few photos

Now that she's feeling much better and we can get out more, here are a few photos of the last few days.

The night before the surgery, watching Free Willy

The view from our room at the hospital

First trip outside (yesterday) to get lunch across the street
Big trip (today) to Walmart

Owl (!!) in the Walmart parking lot

As you can see, her face is still much darker than it was prior to the surgery, but we are looking forward to the long-term results, which are supposed to be quite good (but can take a while to be noticeable).  She is still not totally comfortable sitting (in the car or anywhere else), but the fact that she was fine riding to and from Walmart today (about 20 minutes each way) makes me feel much better about our upcoming trip home to Princeton on Monday.

We're still resting a lot of the time, but short trips outside do a world of good for morale (both hers and mine!).