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Help Juleiny breathe!

Softball carnival to be held to benefit teen in need of lung transplant







Moca, Puerto Rico - A softball carnival will be held Sunday Feb. 6th from 9:00 am to 9:00 pm at Parque del Barrio Plata en Moca, to benefit Juleiny Jiménez, a 17-year-old teen from Moca who is in critical need of a lung transplant. Because lung transplants are not available in Puerto Rico, she and her family will have to travel to the United States for the procedure.


Juleiny has a genetic condition called Hermansky-Pudlak Syndrome. The condition causes albinism, low vision, a bleeding disorder and in her gene type, a progressive and fatal lung disease called pulmonary fibrosis. Juleiny has developed the lung disease of HPS at an exceptionally young age. The hospitals in the US have already done a successful lung transplant in a patient with this genetic disorder.


Insurance doesn’t usually cover many of the expenses associated with a lung transplant. Juleiny and her family will have to temporarily move to the US to be close to the hospital while Juleiny waits for her new lung. After the surgery, the family will have to remain in the states for several months for follow-up care.


Please help us make it possible for Juleiny to keep breathing. Juleiny dreams are:


“That I could get my lung transplant so I could have a better quality of life. I want to finish high school with my class and to go to College and pursue a career in the health care field. I want to reach others and help them by teaching them about my experience and pass on my knowledge about Hermansky Pudlak Syndrome so others have the chance to get a better quality of life, the chance that is now offered to me. I also want in a future to get marry and to have a happy family. I want to give the best of me to others.”


The softball carnival will include live music, games, food sales and raffles.


For more information about the event contact: Nilsa Quinones o Omayra Vazquez al 787-368-4805 o al 787-818-0634 or 787-463-0757.


To make a donation to the make a check or money order to Juleiny Jiménez Lung Transplant Fund, Banco Popular de Puerto Rico account # 085322601


To learn more about Hermansky-Pudlak Syndrome call: 1 (800) 789-9HPS or go to www.hpsnetwork.org.





Carnaval de softball pro fondos trasplante de pulmón de Juleiny Jiménez






Moca - Un carnaval de softbol se llevará a cabo el domingo 6 de Febrero del 2011 de 9 a.m. a 9:00 pm en el Parque del Barrio Plata, en Moca, a beneficio de Juleiny Jiménez, una adolescente de 17 años de edad, de Moca, quien necesita con urgencia un trasplante de pulmón. Debido a que los trasplantes de pulmones no están disponibles en Puerto Rico, ella y su familia tendrán que viajar a los Estados Unidos para el procedimiento.

 Juleiny tiene una condición genética llamada Síndrome de Hermansky-Pudlak. La condición causa albinismo, disminución de la agudeza visual y trastorno de la coagulación. El tipo especifico de gen que ella tiene causa además una enfermedad pulmonar progresiva y fatal denominada fibrosis pulmonar. Juleiny ha desarrollado la enfermedad de los pulmones de HPS a muy temprana edad. Los hospitales en los EE.UU. han hecho trasplante de pulmón con éxito en pacientes con este trastorno genético.






Los planes médicos de salud por lo general no cubren muchos de los gastos asociados con un trasplante de pulmón. Juleiny y su familia tendrán que mudarse temporeramente a los EE.UU. para estar cerca del hospital mientras Juleiny espera su nuevo pulmón. Después de la cirugía, la familia tendrá que permanecer en los EE.UU por varios meses para darle seguimiento a la operación.










Por favor ayúdenos a mantener a Juleiny respirando. Sus metas y sueños son:


"Quiero conseguir mi trasplante de pulmón para poder tener una mejor calidad de vida. Quiero terminar la escuela superior con mis compañeros e ir a la universidad ha seguir una carrera en el campo de la salud. Quiero compartir con los demás mis experiencias y transmitir mis conocimientos sobre el Síndrome de Hermansky Pudlak para que otros tengan la oportunidad de obtener una mejor calidad de vida, oportunidad que se me ofrece a mí ahora. También quiero en el futuro casarme y tener una familia feliz. Quiero dar lo mejor de mí a los demás. "


Para más información favor de comunicarse con: Nilsa Quinones o Omayra Vazquez al 787-368-4805, 787-818-0634 o al 787-463-0757.


Para hacer una donación monetaria, haga el cheque o money order a nombre de Fondos Trasplante de Pulmón Juleiny Jiménez, Banco Popular de Puerto Rico número de cuenta 085322601.


Para conocer más acerca del Síndrome de Hermansky-Pudlak , llame al: 1 (800) 789-9HPS o visite la página de internet www.hpsnetwork.org.







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