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, March 29, 2011

We're out!!!

First of all, thanks to our lovely guest blogger, Beth, for keeping everyone in the loop. :)

I'm happy to report that we are out of the hospital (!!!) and at my friend Jill's house for a couple of days to rest up.  I'll sum up how it went along with the pictures but let me just say that we are so grateful to the staff at Shriner's who were so incredibly wonderful to us during our stay, and to Dr. Donelan who performed the surgery.  Yesterday was a little rough, after Deysi started really waking up from the anesthesia, but she woke up feeling 100% better this morning (much to my relief!) and, aside from a little pain at the suture sites, she's doing great!  Dr. Donelan decided not to work on her left hand after all, leaving that and the work on the skin grafts on her face for another opportunity, so it really was a minor surgery, for which I was extremely grateful.  I would much rather do this little by little and get it right than rush into things and possibly have a negative result or cause her too much pain all at once.  We're scheduled to see Dr. Donelan again on Wednesday (a week from tomorrow) so we'll see what he says, but everything looks great!  Thanks so much to all who have kept Deysi in your prayers and in your hearts, for all of your help that has made this possible, and for those who are letting us invade houses and cars to get to where we need to be and stay a while!  :)

Our last romp in a school playground in Arlington, before heading off to Shriner's on Sunday afternoon

And when Deysi got a hold of the camera, what did she take a picture of?  Chip--I think she's hooked!

Our room

Our VIEW!!

Dinner Sunday night (chicken fingers--yum!)

Showing off our "bling"--made by Deysi with her fun flexy toy.

Last snack before she started fasting at midnight on Sunday night

While I waited...

Right after we came down from the OR

I didn't take any pictures was a pretty crummy day...she slept a lot of it (and looked like the previous picture) and had an upset stomach and head ache and generally felt gross...

We both got a good night's sleep, and this morning she woke up asking for breakfast!  Yay!

After breakfast and a hairwash, we tried out the toys in the amazing toy room...
A fun basketball hand game...

Bowling, anyone? or foozeball...

End of day update

Deysi had a not so great reaction to waking up from the anesthesia, but is now doing well and her tummy has settled.

Still no word from Anna on the results, but it seems like everything potentially dangerous is safely done with.

Monday, March 28, 2011


Deysi is out of surgery safely, and (as of 1pm) was fast asleep. God is good!

Update via text

Deysi went in to surgery, and had no problems falling asleep. Anna's waiting, and drinking coffee.

Will update this evening, with results!

Sunday, March 27, 2011

Update - settled into the hospital

Hi all! This is Anna's sister Beth, updating the blog while Anna and Deysi are in the hospital (which is apparently also an internet dead zone). Here's the update from Anna:

Deysi has been admitted to the hospital, and everyone on staff has been really nice and helpful. They're both sleeping there tonight; there's a fold-out bed in Deysi's room for Anna to sleep on, and overall the facilities seem really nice. Apparently they're on the 7th floor, and the view of Boston is amazing! They had to do a bit of prep already, and while it wasn't so much fun, Deysi seems to be handling it pretty well.

The procedure will happen tomorrow, and here's a brief summary of Deysi's schedule:
* 6am: prep starts
* 8am: go to the surgery area
* 8:30-9am: tentative start time for surgery
* noon: tentative end time for surgery

After this there will be some recovery time spent in and around Boston. How much exactly is still pretty flexible, but Anna estimates 3 days of recovery in the hospital, and maybe as much as two weeks in the area.

Unless there's a sudden wifi connection extravaganza in the hospital, it may be me posting brief updates for these days of recovery. I'll post tomorrow morning, when I get the text that the surgery has started, and then also when I know the results. But please don't be concerned if the results post takes a little while to arrive - I know I won't be able to update the blog between noon and 5pm (I'll be teaching), and it may be even later on my end.

Finally, I almost forgot the most important thing! There have been lots of people who have volunteered places for them to stay, lots of people who have wanted to get involved, and lots prayers; they make a big difference. Anna wanted me to be sure to thank everyone. =)

Saturday, March 26, 2011

Day Trippin'


We took a lovely little jaunt down to Dartmouth/Westport this morning, where we had a splendid visit with my buddy Martyn Little, shared a delicious lunch (friends, we have a clam-lover here--she's a real New England girl!), stopped off at the Westport beach (she kept tasting the water and saying "oh, it's so sweet" to which I would respond "no, it's salty"!) and had a tasty sausage sub for dinner (have I mentioned we LOVE meat?!).  All in all, a great day.  Tomorrow we head off to Shriners after Mass and lunch, with our suitcases in tow.  I'm hoping I will have internet access in the hospital itself, so I will keep the latest news coming as quickly as I know it!

 Martyn Little and Little Missy :)
(Even the waitress was impressed--she finished her fish and chips, helped me with my fried clams, tasted Martyn's mussels and had a chocolate ice cream for dessert!!)

 Self-shot with supporting cast by Ms. Aguilar :)

Sunny and chilly at Westport Beach

Rocky,  cold and BEAUTIFUL!

Dinner: before

Dinner: after :)

Friday, March 25, 2011

Gone fishin'...

Or, at least, gone to "see the fishies"! 

We had a fun day yesterday...we started with some school...

  Working with syllable cards--trying to make 10 words...

 There you are, folks--ten good words!  

Then, in the afternoon, we went to the New England Aquarium!  
Lots of fishies and even more penguins!

 Playing with the little fish-shaped light that the penguins chase...we spent a lot of time on this one!

 With a tank of tropical fish...

 Another pretty penguin statue...

 Pretty Deysi and pretty Boston

 Checkin' out the boats

 Did I mention we LOVE dolphins?!  
(Good thing they're not an every day sight or I'm sure I'd be taking lots of pictures of them, too!) :)

 Right before the IMAX film "Whales and Dolphins"--it was a little scary, but we loved it!

Then, this morning, we went to visit Fr. O'Leary up at Tufts and we participated in a midday Mass where Deysi received the Annointing of the Sick in preparation for the surgery on Monday.  We had a nice visit up at Tufts and Fr. O'Leary gave Deysi a real metal slinky--hours of entertainment!!

In the afternoon we went back to Shriner's to have Deysi's TB test read (it was negative--we figured as much) and then had a tasty dinner at Nick's up by Tufts.

Tomorrow we'll head down to Westport for a visit to the beach and some dear friends and will be back to Arlington tomorrow night. 

Thursday, March 24, 2011

First Visit to Shriner's

Yesterday we had our first visit at Shriner's.  I wanted to post last night but my Dad's laptop had issues picking up Donna's wi-fi, so we're here in the parking garage next to the New England Aquarium (another post on that will hopefully follow this one!) eating in the car (the Dunkin' Donuts didn't have seating) and I'm using the free internet they have in this area! 

Our visit was wonderful, we met Dr. Donelan who will be performing the surgery on Monday (now you have a specific name to pray for!!!) and many other wonderful staff members at Shriner's.  The good news is that Dr. Donelan thinks that this first surgery will be a fairly simple one, only working on the areas of second-degree burns on her face and fixing up the finger nails on her left hand.  He said that the difference would still be noticeable but that at a later date he would like to work on the areas of the original skin graft (the darkest spots on her nose and cheeks) and the skin on the left hand, but that the work on the hand will require a skin graft, which requires a minimum month-long stay in the Boston area.  He guesses that we will only be in the hospital for a few days this time and in the Boston area for 2 weeks, which made me awfully happy, and as I was signing the release form he reiterated that this surgery can have minor complications such as bleeding and infection, but that it is virtually 100% risk-free in terms of more serious stuff.  Boy did he know how to ease my mind!!!

Playing the fun computer games in the waiting area

Watching "Arthur" while waiting for the doctor to come in to see us

Yummy chicken after all the tests and x-rays (standard procedure for international patients) were over

I thought I would get her ice cream but once we saw the chicken, that was it, she was sold.  :)

On the way home I pulled over after about 10 minutes of driving to get gas and this is what I saw in the backseat!

Back at Donna's house in Arlington--as you can tell, this was taken by Deysi herself and the real focus is the cat (Miles), not me

Another Deysi masterpiece :)
My dear friends Donna (who is kindly letting us stay at her house!) and Jill 

Tuesday, March 22, 2011

And...we're off!

After a lovely visit from our neighbors Bruce and Sage last night (there was a serious gymnastics/ballet/breakdancing competition going on in our living room at about 8pm last night)...

...we hit the road! 

Someone, who shall go unnamed, forgot all the winter clothes, so we had a false start :), but we managed to get into Arlington before 6pm, so I call that a good day.  I wish I could have taken pictures of all the hysterical positions she found to sleep in while we were on the Merritt Pkwy!  We saw some more snow and icy lakes and made it to "Massachukie" without any major snags.  We enjoyed some goldfish and apple juice (and Pez--thanks, Sage!) as well as a delicious lunch at McDonalds (OK, give me just a wee bit of credit--she's already been here 2 weeks and this is our first McDonalds lunch--even I'm impressed with myself!).  And yeah, much to my chagrin, she loved her nuggets and fries.  :)  Now we're all settled in at Auntie Donna's house; we've played with the cats, eaten pizza and watched a movie and now are heading off to sleep.  I'll post all our news tomorrow after our visit to Shriners.

Weekend craziness

Our dear friend Mary took us on a wild and crazy adventure to the Jerz Jump!  And boy did we jump!!

It took all of about 6 seconds for Deysi to warm up to this world of inflatables...

I love this great shot Mary took--going in for a lay-up on the moon walk

We drank a lot of water (this jumping is no joke!) and had to practically beg her to go have a snack 

Can you tell we loved this?!

After 3.5 hours (!!) we were pooped!

On Sunday, after crazy car shuffling to get back and forth to 3 different Masses with three different people, we had a lovely lunch with Aunt Anne and Uncle Randy (my mom's sister--and my godmother, I might add--and her husband).  Uncle Randy served up a delicious tomato soup and we had a wonderful time!

Discussions... (Mom, Aunt Anne and Beth)

...and now the posed shot...(yeah, ya think these three are related to each other?!)

"You guys just keep chatting...I'll shell a few more peanuts..."

The whole gang

And then from Summit we made our way over to Chatham (without the other 3 Kupins who had to head home) to visit our dear friends who have been family ever since they moved onto Erdman Ave. oh so long ago, the Forness clan.  I realized I almost never have any pictures of our visits because I spend so much time chatting away that I forget to take my camera out!  I did manage to get one, though...

Three serious hockey fans contemplating the Devils impending win :) 
For a few glorious seconds after my bad attempt to explain this crazy game, Deysi thought that Brian was the hockey goalie she was seeing playing for the Devils...I wouldn't be surprised, someday, Bri...  :)

The girls, of course, didn't make it into the picture because we were gabbing away in the kitchen.  :) 

And look what we saw when we woke up this morning!!!  It had turned into rain halfway between Chatham and Princeton, but did she ever get a kick out of it while it lasted!!

 We leave for Boston tomorrow morning and our appointment with the surgeon at Shriner's is on Wednesday at 11am.  We're hoping for some more concrete info regarding exactly what the surgery is going to involve and how long they think the recovery time might be.  We are so grateful to have had this time to see and experience so many wonderful things and we've set ourselves up for a lot of really great stuff once we get back to NJ post-op.  Having things to look forward to helps a lot!  Please keep us in your prayers as we start this next leg of our journey--there's a part of me that would love to bypass the surgery and all that goes with it, but God's got this in His hands and we're just going to try to take things a day at a time.  He's taken us this far and will see us through to the other side. 

Friday, March 18, 2011

La Estatua ("Estuata") de la Libertad

Guess who we went to see today?
I'll give you a hint...

 On the ferry from the Jersey side...

Look who came to meet us! 
(Former Hogar Volunteer Tara Greene and her mom Pat--Deysi's Madrina!) 

Walking around Liberty Island (we couldn't actually get into the Statue--tickets up to the crown are booked through May!!)
The ducks and sea gulls around the island were just as interesting as that green lady!

Yeah, I cut off her arm a little...but the people down below are really the focus of this picture anyway!  :)

"Don't worry, Tara, I'll take some pictures for you!"

So cute!

"Let's see here...hmmm...interesting...oh, did you want to see??"

Ducks and seagulls, up close and personal.

Looking at the Lady herself

See ya' later, Lady Liberty...