Maribel and Angel Rodriguez had a nice life in Puerto Rico. They were blessed with two beautiful sons, Queniel and Kenneth, and were a young, happy family. Queniel, their eldest son is now 10 and has been fortunate throughout his young life to have no health issues. His little brother, Kenneth, had a different experience.
From the time Kenneth was born, he faced health problems. He was jaundice and was originally misdiagnosed with Biliary Atresia as a baby, a rare disease of the liver and bile ducts that occurs in infants. He underwent a surgery that proved unnecessary, and continued to get worse. He had phototherapy treatments and his parents made sure that he had the best care that was available. After the Rodriguez family saw no improvement in their son, they knew that they had exhausted their medical options in Puerto Rico.
After being told that there was a specialist in Philadelphia who may be able to help Kenneth, Maribel and Angel moved into action. Since a long stay trip to Philadelphia would be expensive, Maribel began researching where to stay and how they would be able to afford the journey. Her efforts led her to make an appearance on the television show Entre Nosotras, a popular show that often highlights real-life stories of people in need. Her participation in the show resulted in her receiving plane tickets for the entire Rodriguez family to come to the U.S.
Once in the U.S., the Rodriguez family took Kenneth to a children’s hospital in Philadelphia and settled in at Gift of Life Donor Program’s Family House – a “home away from home” for families seeking transplant related care in the region. “It was so nice to have a safe, comfortable place to come home to.” said Maribel, Kenneth’s mother. “It really helps to deal with all of the stress when you are surrounded by people going through the same thing as you. If we had not found the Family House, we would have never been able to stay in Philadelphia.”
Doctors in Philadelphia diagnosed Kenneth with a rare genetic disorder that had affected all of the major systems of his body, including his liver. He was only two years old at this point, and it was a frightening reality that his health situation was so dire. Doctors told Maribel and Angel that without a liver transplant Kenneth would not survive. He was very sick, but still not sick enough to be at the top of the organ transplant waitlist – until he had an accident that changed everything for him.
Due to his genetic disorder, he has very fragile bones that easily fracture. He was already suffering from a broken leg during his trip to Philadelphia, in addition to his other health ailments. Then, Kenneth fell and fractured his skull. His parents feared for the worst with such a devastating injury. Kenneth’s delicate health and body were suffering beyond what most two year olds could withstand. Miraculously, the tragedy of his skull fracture resulted in a glimmer of hope. Because of his fracture, he was immediately moved to the top of the transplant waitlist.
Soon after, the Rodriguez family received the call that they had been desperately waiting for – the hospital had a matching donor and a new liver that they believed would save Kenneth’s life. After many hours in surgery, he woke up with tubes connected all over his small body. But, when Maribel looked into her son’s eyes, she immediately knew that something had changed. His skin lost nearly all of its yellow color from jaundice, and his eyes were clear. The family knew that there was now hope. Because another family looked past their pain and said ‘yes’ to organ donation, there was now hope for Kenneth.
After two years of not being able to sleep, Kenneth slept soundly for the first night in his short life. His new liver allowed him to sleep peacefully without the constant skin itching that plagues many people with failing livers. His health continued to improve and he was released from the hospital.
Today, at four years old, Kenneth is hard to slow down, and loves to go on the swings, to run and to ride carousels. He has become a bundle of energy and has acquired a serious love of all things sweet. “Before his liver transplant, all chocolate and sugar tasted sour to him.” said Maribel. “I’ll never forget his face the first time he tasted chocolate after his transplant. He looked shocked and in awe. His whole face lit up. Now, he loves to eat Nutella and sweets.”
Because of another family’s decision, Kenneth is now able to live the life of a four year old without limits. “It was hard on both Kenneth and Queniel when he was sick. We would go to the park, and other children and parents stayed away. They were probably fearful of Kenneth’s illness, but it really affected them. We didn’t talk about it, but I could see that it really upset Queniel – I think because he’s older and understood more. It’s so nice to see how happy they both are now with so many friends to play with.” said Maribel.
Today, the Rodriguez family calls Philadelphia their home. They are so grateful to Kenneth’s donor for saving their son. Their lives have changed dramatically for the best since Kenneth’s transplant, and they feel blessed that he’s come so far.
As Hispanic Heritage Month begins, it is a great opportunity to reach minority communities about the importance of registering as an organ donor. It’s also a time to recognize Hispanics who have received the gift of life – like Kenneth – and those who are currently waiting for a life-saving organ transplant. It’s also an opportunity to honor the generosity of individuals and families who were able to give to others through donation.
“I think it’s hard for people to understand how important it is to be an organ and tissue donor, until they have a family member or friend whose life depends on it. I also think that there are a lot of untrue myths that make people not register. I hope that no one has to go through what we did, but I would like others to know how significant it is to register as a donor.” said Maribel.
Today, there is a critical need to increase the number of registered organ and tissue donors in Gift of Life Donor Program’s region (eastern PA, southern NJ and DE) – with nearly 5,900 men, women and children awaiting a life-saving organ transplant. In the U.S., over 122,000 people are waiting. Nationally, minority communities constitute 36% of the population, but represent a startling 58% of those waiting for a life-saving organ transplant.
Just one donor can save and enhance the lives of up to 50 people, making a huge impact that is far-reaching. Register today at www.donors1.org. It only takes 30 seconds.