Maria Deysi's Story...

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?

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!

Wednesday, January 22, 2014

Boston

We left ourselves a full day to travel to Boston, leaving Princeton around 10am on Monday...little did we know that we would actually need all of it--we traveled WITH the nasty snow storm all the way up the east coast! 12 hours and many prayers later, we arrived safely in Beantown, so very glad to have a warm place to sleep and to not have to be in the car for a while.  We are staying at the Constitution Inn, a YMCA affiliated hotel near the USS Constitution dock, that has a much lower rate for Shriner's patients and their families and a free shuttle bus to and from the hospital.  We do miss hanging out with Donna, Willy and Miles in Arlington, though!   No pictures of our trip--just imagine a snow globe with us in the middle.  That about sums it up.

Today we had our meeting with Dr. Donelan, Deysi's surgeon.  This was the big, potentially game-changing hour we had been waiting for, but there weren't too many surprises.  Dr. Donelan is as wonderful as ever, which is sort of a given, since he's a Jumbo (which is a Tufts grad, for all you non-jumbos out there).  The rest of the staff was equally fabulous and it was great to see everyone.  His plan is to work on Deysi's hand on Monday, removing the nail on her ring finger and making it so that a new nail can re-grow itself from that nail bed (amazing!).  He will also make a small incision between each of her four fingers to allow her more freedom of movement and flexibility.  Finally, he will also be starting a series of laser treatments on her face that will, over time, lighten the tone of the grafted sites.  If we like what we see, he will try to squeeze another of these laser treatments in before we leave in March.

He was in and out in a flash and there wasn't any time to snap a photo, but I am determined to get at least one of him this time around.  Maybe next week.

We see the nurse practitioner tomorrow and then have "off" until the day of the surgery, which is Monday. The best news of all today is that it will be an outpatient surgery--we'll go in in the early morning and be discharged as soon as she's up and feeling good.

After our appointment, we managed to find a Dunkin Donuts (which are so...scarce...in this neck of the woods) and enjoy a treat.

2 comments:

  1. Me llena el corazon saber que todo sigue bien y te doy gracias Madre por todo lo que haces para Deysi. Rezarè para ustede, especialmente en el dia lunes. Que Dios las bendigas!
    Un abrazo fuerte a las dos,
    Giorgia.

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  2. Gracias, Giorgia! Muchos abrazos para ti y para todos.

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