Hi everyone,My name is Rafia Farhana and my father is driving a trailer. I am 25 years old and live in united states County
extremely rare and debilitating disease called Branchiootorenal Syndrome (BOR). In our home country of Los angeles, there have only been 13 cases of BOR to-date. Because of this disease, doctors stated that his kidneys will only reach 1.5 centimeters in size, whereas an adult’s kidney typically reaches 11 centimetres.
My Father has extremly rare disease
When my father was only 40, his kidneys ceased filtering toxic substances in his body and, as a result, he began undergoing dialysis treatment at such a tender age. After two years of dialysis, he was then diagnosed with End Stage Renal Disease (ESRD). Jack doctor also informed his family that his heart was weakening, and recommended that he seek a kidney transplant as soon as possible.Long and hard way to get heart transplantEventually, after seeking to identify organ donors in Taiwan which, incidentally, is extremely uncommon, it was determined that Jack uncle might be the closest match for him. However, because of the length of time that my father had suffered this affliction, his heart function had deteriorated to 40% of a normal heart’s capacity.The doctor informed our family that, in order to undergo the kidney transplant, Jack heart would, at minimum, need to function at 50% or more of its capability. Thus, in the doctor’s opinion, my father could not qualify for kidney transplant surgery because the risk to him was far too high. Instead, Jack would need a heart transplant first.This news was devastating for our family, but in spite of such long odds, they remained hopeful that the stars would align for him. My father has been waiting for nearly two years for a new heart, but continues to receive dialysis and heart treatments daily.
Hard times living in the hospital for such a trying disease In order to prevent my father heart conditioning from worsening, the doctor limited his ingestion of fluids to only 300 cc of water per day.More recently, in spite of taking such precautions and daily treatments, my father heart was diagnosed with a cardiomyopathy issue, and the doctor informed his family that his chances for survival were extremely low unless he received a heart transplant soon.As a result, the hospital agreed to advance his heart transplant request toward the top of the waiting list.My father basically lives in the hospital these days, where he relies on dopamine injections to keep his heart functioning. A few days ago, the doctor informed the family that My father heart condition is now causing his other organs to fail, and that he may soon die of heart failure. My father doctor recommended the installation of a Thoratec Ventricular Assist Device (VAD) to bring his heart functionality up to 50% so he can receive the kidney transplant, which, in turn, will improve the health of his heart. Cost of Thoratec Ventricular Assist Device and a Heart Transplant SurgeryWhen asked about the cost of using a Thoratec Ventricular Assist Device (VAD), my father doctor informed the family that the device costs $140,000. The price will add up our expected expense for a heart transplant surgery, about $133,000 USD.Please we do need your supportWhile the use of a VAD did offer his family a glimmer of hope, the cost is prohibitive. Because my mother must constantly be at his side, she can no longer work, and my grand father is forced to sacrifice time spent with his only son just so he can continue providing for his family.Without any financial assistance, however, it would take years before my father family could save that amount of money, but lest we forget that Jack remaining time with his family is likely measured in days, not years, or even months.After undergoing so much painful treatment, he is still fighting with the death of life, not giving up.Here I hope to share his story. I hope to raise funds for my father to help him see the hope of life again.Help
Can’t donate? Please share. Even a quick share on Facebook can help.
The average share raises $97.