In search of a kidney

February 28, 2012 at 4:09 pm Leave a comment

The post below is taken from Facebook about a boy named Stephen with ARPKD who needs a kidney. The post was written by his aunt.
 

“In Search of Miracle #2 As many of you already know, my nephew Stephen was born 1 year ago with a very rare kidney disease called Autosomal Recessive Polycystic Kidney Disease (ARPKD). When the disease was discovered during my sister’s 27th week of pregnancy, Stephen was given a less than 1% chance of living more than a few hours past birth. He was to have such severely underdeveloped lungs that the doctors said he would likely not even take one breath. However, on January 4, 2011, we were granted our 1st miracle – and Stephen Charles Schwartz came into this world crying (and breathing!) and fighting for his life with fierce determination. At 5 days old he had BOTH of his kidneys removed. My sister, Lindsey, and brother-in-law, Bill, have been caring for him at home since he left the NICU at about 60 days old. They are true warriors who do everything imaginable for their beautiful son, including his extensive 24/7 medical care. Today, the doctors at Children’s Hospital of Philadelphia (CHOP) gave Lindsey and Bill some amazing news – they gave Stephen the go-ahead to be placed on the active transplant list to receive his first new kidney. However – the difficult part is that the doctors VERY STRONGLY suggest that a child of his age receive an organ from a living donor. This helps to prevent a multitude of problems including rejection and infection. As fate would have it, Stephen’s blood type is O Positive. No one in either of our families is O+. So……this brings me to the eventual point of this whole long post, which is that we are left to find our own donor. I’m hoping that by passing on our plea and asking all of you to please pass it on, that we might find someone who has given thought to giving the gift of organ donation. Any one of us in our family would happily repay the favor and donate one of our kidneys to another person in need. If anyone is even remotely interested in being tested to see if they are a match for Stephen, they can contact Lindsey directly at lschwartz531@gmail.com or anonymously through the hospital. The hospital transplant coordinator is Joanne Palmer at CHOP. Her direct number is 215-590-6778 and her email address is Palmer@email.chop.edu. All of the information given to Joanne is completely confidential (HIPAA) and if the person is not a match, they don’t tell us why. Just that they’re not a match. And if it does work out, Lindsey and Bill’s insurance pays for everything…including housing, meals, travel expenses and all of the doctors bills. THANK YOU from the bottom of my heart to all of you who have taken the time to read this and pass it along. If you would like to learn more about Lindsey, Bill and Stephen’s story, feel free to read Lindsey’s blog, which she started the day of Stephen’s initial diagnosis. The website is http://stephens-journey.blogspot.com/. Our best wishes to all – Jess & Kevin Sweigart”
 
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Monday Memories PKD Foundation

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