Dear friends and family,

This is the blogpost I never wanted to write; the destination on our family’s journey in which I hoped never to arrive.  Our sweet nine year old son, Benji, has reached the point where we *must* begin to advocate for a living kidney donor.  

We have known this day would come eventually, but we have done everything within our power to ensure its delay.  Since coming home from China in January of 2016, Benji has undergone several preventative and corrective surgeries, nutritional therapies, and medicinal treatments to stave off a kidney transplant.  We’ve been pleased to be able to get him the best care the United States has to offer, but there is only so much that modern medicine can reverse.  Benji’s kidney function has reached 18%.  Dialysis is usually recommended around 10%.  After learning more about the shortcomings, trials, and terrors of dialysis, we are praying mightily he can avoid it.  

For those of you who may not know us personally or Benji’s story:  

Benji was born with (what was thought at the time to be) conjoined kidneys and a stenosis (or blockage) in one of his ureters.  Because that blockage was not surgically removed, Benji’s urine refluxed constantly back up into his kidneys and caused irreparable damage, and ultimately, organ failure.  

When we adopted him at the age of 3 1/2, we were told that his kidney function was 22%, that he would most likely need to be listed immediately for kidney transplant upon arrival to America, and without any further medical intervention, he probably would not survive much beyond his 5th birthday.  We grieved these realities, then set to work getting him to the top doctors in New York City, Charleston, Columbus, Cincinnati, and our own hometown of Louisville, Ky.  Through the skilled hands and collaborative care of those doctors, his kidney function buoyed to an astounding 38%!  Over time though, and with much-needed bodily growth, his kidney function has steadily declined and we are once again at a critical point where transplant is our only viable option.  

Benji is on the organ transplant list with Cincinnati Children’s Hospital as his designated transplant center.  It was explained to us by their transplant team that a living donor is Benji’s best bet for the most successful outcome.  

You can help us search for a living donor in several ways:

  1. Spread the word to your family and friends who might know someone that is willing to be considered as a donor.  You are welcome to share this post to any social media platforms such as Facebook, Instagram, etc.
  2. Prayers and positive support are always appreciated.  
  3. You can learn more about kidney donation from the National Kidney Foundation at www.kidney.org/transplantation/livingdonors.                   

If you would like to be considered as a kidney donor for Benji, you may contact cchmc.donorscreen.org. Thank you for partnering with us.  We are keenly aware that this is not an easy request.  But we, like most other parents, love our son very much and desire to see him have the chance to grow up, graduate high school, seek gainful employment, and enjoy the blessings of a wife and children.  A kidney transplant is the only path forward to a future that includes those hopes and dreams.  

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