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 22, 2011

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. 

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