Yuli’s Story

Yuleisis (Yuli) is a 12-year-old girl from Panama. She is the 6th of 7 children and was diagnosed in 2012 with atrial septal defect (ASD). Earlier this month, she traveled to Austin through the HeartGift program to have her heart repaired.

I learned about Yuli and HeartGift through Dr. Karen Wright, Lucy’s cardiologist. Dr. Wright is on the board of HeartGift and sees all the patients. She put me in touch with Jennifer Edwards, the executive director of the Austin chapter. I recently spoke with Jennifer on the phone and she gave me an overview and history of this lifesaving program.

HeartGift started in 2000 in Austin. There are five chapters in different cities. They bring twelve patients a year in from countries where proper treatment or surgery for their conditions aren’t available. HeartGift provides housing, translation, and transportation and works with wonderful volunteers who sometimes travel with the patients and provide housing in Austin.

Jennifer provides updates via email to all the friends of HeartGift. The stories are truly inspiring. The children come from countries such as Mongolia, Liberia, and Belize. They take children who are 13 and younger; most of the patients are toddlers. The recipients of HeartGift have to have conditions that can be repaired in one surgery that won’t require follow-up care, since proper follow-up care is not available in their countries. Most of the beneficiaries of this program have congenital heart defects. Twenty percent of the patients can be treated in the cath lab, but most require open-heart surgery.

Jennifer says she is amazed by the mothers she meets through this program. They are all “tenacious” women who refused to give up until they found help for their children, no matter how hopeless the situation seemed.

At the time I spoke to Jennifer a few weeks ago, HeartGift Austin was already welcoming their third patient of the year. One of the 2014 recipients was actually the 200th recipient of a HeartGift! Courtney, a 2-year-old girl from Belize, received her life-saving procedure right before Yuli arrived in Austin.

It was originally thought that Yuli could be treated in the cath lab, but upon examination, Dr. Wright deemed her condition better treated by open-heart surgery. She received her surgery at Dell Children’s Medical Center on Feb. 6. She did so well that she was out of the hospital and home with her mom and host family by the following Sunday.

Yuli is doing very well and scheduled to return home to Panama on Feb. 25. I am so honored to share her story in her own words in her native language. Her account does not include much detail about her actual illness and treatment, but, as Jennifer put it, it is “the honest perspective of a 12-year-old girl”. Thank you so much to Karen Wright for putting me in touch with Jennifer, Jennifer Edwards for sharing the program with me, and Yuli for sharing her story.

 

Hi, my name is Yuleisis Pino. I am 12-years-old and was born on 30 April 2001 in Panama. I have always loved to study, play, and dance. My favorite school subject is math and my favorite sport to play is volleyball. I love to dance “Bachata” & “Reggae”. I especially love to go swimming in the river near my house. I have six brothers and sisters. In 2010, I was able to visit the famous bridge called “Bridge of the Americas” in Panama City. One other place that I was able to visit is called the “Cinta Costera”, which is a special part of the city near the water where there are lots of fun activities and things to do and see. In 2012, I was diagnosed with heart problems. Thanks to such foundations as “Obsequio de Vida of Panama” and “HeartGift of Austin” who gave me the chance to come to the United States to get the needed surgery to fix my heart defect. I also give thanks to the family that allowed us (me and my mother) to stay with them while here in the United States. I am very happy right now!

Yuleisis Pino R.

 

Hola: mi nombre es Yuleisis Pino. Tengo 12 anos nací el 30 de abril 2001 y vengo de Panamá. A mi siempre desde pequeño me a gustado: estudiar, jugar y bailar. Mi matera favorita es matemático. Mi juego preferido es boliball y me gusta bailar bachata y reggae. Me gusta ir al rio. Tengo 6 hermanos. En el 2001 fui al conocer el puente de las america y la cinta costera fue genial. En el 2012 me diagnosticaron una problema en el corazón. Le doy gracias a dios a los fundaciones obsequio de vida y HeartGift que me dieron la oportunidad de llegar a Austin para obtener la cirugía del corazón y también doy gracias a esta familia que me hospido. Ahora soy muy feliz.

Yuleisis Pino R.

 

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Yuli’s handwritten story

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Dr. Karen Wright checking Yuli’s heart

 

 

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