Ryker needs a liver transplant

Ryker needs a liver transplant

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Patrick Ownby started this petition to Cincinnati Children's Hospital

Cincinnati childrens hospital,
My name is julie ownby, I am the mother of James ryker ownby. He is currently inpatient with hepatoblastoma. Ryker is 2 year old with multiple medical conditions( primarily cerabral palsy, and trach) We came to your center for transplant evaluation and treatment options. After a courtesy evaluation from transplant team.questionable in my oppinion on being thorough and accurate on assessment!! Neuro exam with multiple sedative meds on board,not examined with assisted medical device( hearing aid). And no communication with home pulmonologist of progress or records. The decision was made to deny my son a transplant!! We have been told multiple reason for denial, reasons are constantly changing.. after talking with multiple drs from transplant team and ethics committee, a new evaluation from neuro exam,and more accurate information given to pulmonary has been completed. Our understanding at this point is denial for transplant due to quality of life. Developmental delay and possible need to be vent dependant. We have a very decent understanding of his quality with developmental delay and status encephalopathy. This means to consist with current brain development and possible increments of improvement. My son has been vent dependant since birth, with exception of seven months prior to cancer diagnosis of weaning. Several of those months with only vent dependant while sleeping,and eventually a month of no vent dependance or breathing assistance. The concern lies in the unknown of if we would continue to wean or become more vent dependant. Regardless of outcome, I believe my sons has quality to life. Many children live with vent dependance Everyday and would consider having quality!! Also a large number of Americans have cerebral palsy! Many have went on to live very meaningful lives!! I understand transplant committees are hesitant to take chances for fear of poor outcomes. However, advances in medicine and healthcare are changing outcomes every day! Denial of transplant on these basis is discrimination! To determine a child's life value this way is very cruel! We came to your center for help with childhood cancer, not to be told he doesn't deserve the gift of life because he is different. All of the stated reason are something we have lived with since birth and would consider his life to have quality!! When looking at would giving him a liver benefit his quality, yes it would give him to opportunity to continue his life, and live cancer free! The only other option is death! When weighing the options I choose life for my son, to continue with current quality of life he has is a welcoming options for us!! Limited research has been published on this matter, because no one has taken a chance on these kids! All lives matter even when your different! Please give my son a chance! Change the way developmentally challenged children are treated! Your hospital has a reputation for being the best in transplants, and putting children first! Make a difference! And please start with mine!!
Sincerely,
Julie ownby

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