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Story
Hi everyone,
My name is Qiu Wanyu and my husband is driving a trailer. I am 41 years old and live in Taipei County
Andrew, my nine-years-old son, was born with an extremely rare and debilitating disease called Branchiootorenal Syndrome (BOR). In our home country of Taiwan, 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.
When Andrew was only 6, 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). Andrew’s doctor also informed his family that his heart was weakening, and recommended that he seek a kidney transplant as soon as possible.
Eventually, after seeking to identify organ donors in Taiwan which, incidentally, is extremely uncommon, it was determined that Andrew’s uncle might be the closest match for him. However, because of the length of time that Andrew 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, Andrew’s heart would, at minimum, need to function at 50% or more of its capability. Thus, in the doctor’s opinion, Andrew could not qualify for kidney transplant surgery because the risk to him was far too high. Instead, Andrew 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. Andrew has been waiting for nearly two years for a new heart, but continues to receive dialysis and heart treatments daily.
In order to prevent Andrew’s heart conditioning from worsening, the doctor limited his ingestion of fluids to only 300 cc of water per day.
Whereas healthy children often beg their parents for ice cream or sweets, Andrew constantly begged his mother for more water. And, even though it crushes his mom to say, “No,” on a daily basis, she has no choice but to deny him.
More recently, in spite of taking such precautions and daily treatments, Andrew’s 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.
Andrew 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 Andrew’s heart condition is now causing his other organs to fail, and that he may soon die of heart failure. Andrew’s 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.
When asked about the cost of using a Thoratec Ventricular Assist Device (VAD), Andrew’s 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.
While the use of a VAD did offer his family a glimmer of hope, the cost is prohibitive. Because Andrew’s mother must constantly be at his side, she can no longer work, and Andrew’s 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 Andrew’s family could save that amount of money, but lest we forget that Andrew’s 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 Andrew to help him see the hope of life again.
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