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 26, 2011

Spring, Holy Week, Easter, Life...

Deysi took this--I think it captures spring perfectly!

These last few weeks have been busy!

We've been enjoying time at home and getting ready for Easter and the New Life it brings with it.

Procession with palms on Palm Sunday

Dad getting everyone nice and wet (and blessed!)

Procession into the church

Before heading out to Easter Vigil Mass

Beautiful Easter Vigil Mass (someone fell asleep halfway through!)

Hunting for eggs Easter morning

Mom, Dad and Beth had to look for their chocolate bunnies, too. :)

Self-shot with Papi :)

Dying eggs with Mami, Beth and Emily (Beth's housemate who joined us for Easter dinner and brought delicious pound cake and strawberries)

I made cheese empanadas for dinner and a few to give away...
(Para mis hermanas que estan leyendo esto--si!!  Cocine!!  Aunque solo eran empanadas...mejor que nada, no?)

Evening procession on Easter

Deysi has also been enjoying playing with some of the neighborhood kids, especially our next-door neighbor Sage.  They've colored, played on her slip 'n slide (so fun but very cold!) and last night watched the Tinkerbell Movie (in Spanish!).  Here they are drawing on dry erase boards the other day, and their creations:

Sage's drawing

Deysi's (notice my Dad on the bottom right hand corner with lots of spikey hair and beard, and me next to him with a side-ponytail veil!)

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!  :)

Saturday, April 16, 2011

Hangin' out at home...

We've just been hangin' out...takin' some pictures...

Oops!  Sorry, Papi...let's try that again...

Ah...much better.  :)

Tuesday was Children's Day in Bolivia, so we had to do something fun...of course it was a big sacrifice for me... :)

Our introduction to soft serve ice cream at Thomas Sweets (chocolate, with Reeces Pieces!)

The mural on the wall at Thomas Sweet's, which she thought was very funny...

After our ice cream we went to see a movie.  The only G-rated movie in our area was a documentary film called "Born to be Wild" about orphaned baby elephants and orangatangs raised in captivity and later released into the wild.  She loved it (as did I!) and we were the only people in the whole theatre (does no one like documentaries any more?!) which was great because I could translate everything out loud to her without anyone shushing us!  :) 

On Wednesday we went to Terhune Orchards with our buddy Gina...I think it had been at least 20 years since I had been!  It was kind of a cold and cloudy day, but we had a great time!

Faithfully obeying the stop sign in the mini tractor pit :)

Gina and Deysi with a pair of nesting Canadian Geese we found (who accepted our presence as long as we didn't get any closer!)

Now we're snuggled up inside, drinking hot chocolate (thanks for the mugs and hot chocolate, Tara and Pat!) and enjoying the movie Balto (for the third time since we rented it, but who's counting!)

We leave on Tuesday for Boston, with a stop for lunch on the way with my dear friend Tracy (the Camp Nyoda nurse who loves not-camping!).  We'll spend the evening in Quincy with "our girl" Segundina, who grew up in the Hogar in Montero and is now married to a great guy who grew up in Massachusetts (but was born in Peru)...sound confusing?  It's a long and beautiful Cinderella story that I'm convinced will eventually be made into a movie :) but the short version is that they fell in love in Bolivia but now live (with his wonderful parents) in Quincy!  We're really looking forward to seeing them.

Updates to follow once we're back from Boston!

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!

Thursday, April 7, 2011

The latest news...

We had a lovely visit with the Chalifoux family (our volunteer Olivia's parents) and after such yummy food, romps in the woods and new light-up sneakers ("beautiful!"), we had to say good bye. 

We were at Shriners by 1:30pm and boy was it full!  There must have been at least 20 families there.  Dr. Donelan came in to see Deysi after the suture tape had been removed and seemed quite pleased with how things look.  You really can see the difference in the sites they worked on and we are so grateful.  The wonderful nurses were able to remove one set of stitches but Deysi got too upset for them to try the others (it's no fun having stitches out, folks!).  So we will go back on Friday and have them taken out with partial sedation as an outpatient.  We will hopefully get a date for our return visit (in approximately 2 weeks) so that Dr. Donelan can see how everything has healed and fill us in on his next step. 

Half of us are now sleeping soundly here in Hopkinton (the other half will hit the hay shortly!) where we have had a wonderful but way-too-short visit with Mom and Dad Cole (my college roomate and soul sister Dana's parents) in Hopkinton.  We will spend one more night with Auntie Donna, Willy and "My-yuls" tomorrow and be that much closer to the city for our 7:30am appointment on Friday.  We'll then see how she is feeling in the afternoon and either head straight back to NJ or rest up and head home on Saturday morning.

No pictures today because the camera was temporarily lost in Deysi's new shoe box (!!).  :)

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?)