My Lung Transplant Journey
Donation protected
My name is Eugenio and I was born with a Rare Disease known as Hermansky-Pudlak Syndrome. It is a genetic affection that causes albinism, low vision, a platelet dysfunction and pulmonary fibrosis. I was born in New York, raised in Puerto Rico and now I live in Massachusetts.
I was born with this genetic affection, but my pulmonary symptoms started around my 30's, like expected. At 42 (6 years ago) I was diagnosed with Moderate Pulmonary Fibrosis and a couple of months after that a started treatment. A treatment that I knew wouldn't cure me, since there is no cure for pulmonary fibrosis, but that helped delay the progression. Knowing that the only "effective" treatment would be a lung transplant, I moved with my wife to Massachusetts in 2016. At it has not been easy. We left the little that we had in Puerto Rico seeking for new opportunities and to be able to apply for the Lung Transplant Program and Brigham and Women's Hospital.
I'm used to not having things easy. I was born with a Rare Disease, legally Blind, judge by how I look like, not by my accomplishments; and now battling this chronic illness that can take my breath away literally. I was blessed to get a companion that supports me and helps me fight this disease every day. It has not been easy going from being productive and working every day, to barely been able to move and to not been able to provide for my family. My disease has progressed to severe pulmonary fibrosis. There are days where I can barely get out of bed, because my body is in pain and the lack of oxygen and the coughing takes a toll on me. I went from using 1 litter of oxygen to 5 litters in about 2 months, and I can't do most of the things I used to without help. But I still fighting. I fight every day against my body, against this disease because I WANT TO LIVE. I want to be productive again, I want to be here to support my family, I want to have children with my wife, I WANT TO BE ABLE TO BREATH AGAIN! And for that I need a lung transplant and you help.
I was accepted to the Lung Transplant Program at BWH about a year ago and as April 19th, 2019 I'm on the list. Is a long journey and not enough time to complete it. It's also a very expensive process, and with me not been able to work, things are getting tight at home. That is why I need your help. I need your help to continue my journey to be able to breath again. The money gathered through donations will be use for my medical expenses pre-operation and post-operation. Every cent counts. Even with medical insurance, after coverage medication co-pays can go up to $1,000 monthly. In addition to that there are food expenses, parking expenses, gas expenses to be cover for those who help me on daily basis, since I'm also legally blind and can't drive. I assure you that every penny collected will be use for a good cause.
Help me to be able to breath again,
Eugenio
I was born with this genetic affection, but my pulmonary symptoms started around my 30's, like expected. At 42 (6 years ago) I was diagnosed with Moderate Pulmonary Fibrosis and a couple of months after that a started treatment. A treatment that I knew wouldn't cure me, since there is no cure for pulmonary fibrosis, but that helped delay the progression. Knowing that the only "effective" treatment would be a lung transplant, I moved with my wife to Massachusetts in 2016. At it has not been easy. We left the little that we had in Puerto Rico seeking for new opportunities and to be able to apply for the Lung Transplant Program and Brigham and Women's Hospital.
I'm used to not having things easy. I was born with a Rare Disease, legally Blind, judge by how I look like, not by my accomplishments; and now battling this chronic illness that can take my breath away literally. I was blessed to get a companion that supports me and helps me fight this disease every day. It has not been easy going from being productive and working every day, to barely been able to move and to not been able to provide for my family. My disease has progressed to severe pulmonary fibrosis. There are days where I can barely get out of bed, because my body is in pain and the lack of oxygen and the coughing takes a toll on me. I went from using 1 litter of oxygen to 5 litters in about 2 months, and I can't do most of the things I used to without help. But I still fighting. I fight every day against my body, against this disease because I WANT TO LIVE. I want to be productive again, I want to be here to support my family, I want to have children with my wife, I WANT TO BE ABLE TO BREATH AGAIN! And for that I need a lung transplant and you help.
I was accepted to the Lung Transplant Program at BWH about a year ago and as April 19th, 2019 I'm on the list. Is a long journey and not enough time to complete it. It's also a very expensive process, and with me not been able to work, things are getting tight at home. That is why I need your help. I need your help to continue my journey to be able to breath again. The money gathered through donations will be use for my medical expenses pre-operation and post-operation. Every cent counts. Even with medical insurance, after coverage medication co-pays can go up to $1,000 monthly. In addition to that there are food expenses, parking expenses, gas expenses to be cover for those who help me on daily basis, since I'm also legally blind and can't drive. I assure you that every penny collected will be use for a good cause.
Help me to be able to breath again,
Eugenio
Organizer and beneficiary
ER Jimenez-Ayala
Organizer
Natick, MA
Yeidyly Vergne
Beneficiary
