On February 2, 2011 we finally got the call that there was a viable kidney offer for Rory. After a very long day of tests and waiting, he went into surgery around 6:00 that evening. Everything went perfectly and he is currently in the “home bound” phase of his recovery…which basically means he cannot be anywhere but our house, our car and the hospital. He has had infections twice that have required IV antibiotics and hospitalization; but that is largely to be expected for a kid who has both a permanent catheter and a suppressed immune system.  You can view an album of photos from the day of his transplant below, but for now, please know that he is no longer on dialysis and is recovering beautifully, all things considered.


Hello world!



He's a great kid to know.


This is Rory. He just turned 11 years old and is in the 4th grade. He likes video games, sharks, learning about the weather and anime. Rory lives with his parents and his sister. His Daddy is an Iraq Veteran who currently serves as a full-time aircraft mechanic in the Michigan Air National Guard. His Momma recently got a wonderful job at a nonprofit agency in Detroit and his sister is a full-time college student studying to become a pediatric Occupational Therapist.

Rory has something called Hinman’s Syndrome, which was not diagnosed in time. Because of this delay, Rory’s kidneys were badly damaged before he got the help he needs. He is in Stage- IV End-Stage Renal Failure and recently received a kidney transplant that will allow him to stop having to do dialysis every single night. Being on dialysis made Rory feel very cranky and sad. Rory is so happy that his new kidney has arrived, and is truly grateful to the donor who gave him the gift of life.

Rory was on the transplant list for over a year before we got the call. He almost got his transplant in February of 2010, but it didn’t work out. If you have followed Rory’s progress on this journey and would like to have the same life-changing impact for someone else, please check out the “Donor Info” page. If you would like to learn more about how you can support Rory and his family as they navigate the many medications, hospitalizations and days off of work that his new kidney brought with it; you can donate to the Rory Fund by visiting the “How to Help” page for donation info and lots of other ways to show you care.

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Thank You Sponsors!!


Thank you so much to everyone who has donated to Rory’s Transplant Fund


Louis Sugarman, Jennifer Flowers

We will continue to add the names of individual donors as we receive permission to do so.


Maloof Jewelers
Kay Jewelers
Maggie Fortmann, Independent Mary Kay Beauty Consultant
The Detroit Tigers
The Detroit Lions
Rammler Golf Club

Kidneys, Karma and the Knights of Columbus


THANK YOU TO EVERYONE who joined our family at the Knights of Columbus this past weekend!

Hundreds of people joined our family at the John F. Kennedy Council Knights of Columbus for a yummy meal and lots of cool events. We had a silent auction, a teacup raffle, several 50/50′s and….perhaps most exciting….a visit from Darth Vader, Chewbacca and the Storm Troopers!! The latter really made Rory’s day, because he is a HUGE Star Wars fan.

Thanks again to everyone who came out. Please check our Upcoming Events page for information about other upcoming opportunities to say hi to Rory and show him that you care.  If you were unable to attend, but would still like to contribute, please click the link below:

Rory’s Scrapbook

Photos from Rory’s Wish Trip
aboard the 2008 Nickelodeon Cruise
Rory is very active in his Cub Scout Pack and aspires to be an Eagle Scout someday.
Rory and his family know how to have fun together! 
But life isn’t all fun and games when you’re a Kidney Kid…

Helpful Links for Kidney Kids (and those who love them)


Dairy Delicious: Yummy low-potassium, low-phosphate milk and cheese sauces for people following renal diets. Affordable medical alert bracelets that not only come in kids sizes, but also have fun interchangeable nylon bands that are actually kind of cool!

National Kidney Foundation Cookbook: A great resource full of dozens of renal diet recipes. Note that extra “S”….it’s an important distinction! This is a nifty place to find online support groups for parents and children.

Children’s Hospital of Michigan: Probably the nicest place to be, if you’re miserable. Seriously though- everyone here is wonderful. Please consider making a donation to their organ donation program.

Make-A-Wish Foundation of Michigan: MAWF does nothing less than make dreams come true for sick children like Rory. His “wish trip” on the Nickelodeon Cruise last summer was the highlight of our lives!

The Gift of Life Foundation: Everything you’ve ever wanted to know about organ donation.

Halachic Organ Donation Society: Everything you’ve every wanted to know about being Jewish AND an organ donor!

The Bedwetting Store: Carrier of the Holy Grail for urology parents: a watch that will beep AND vibrate AND can be set to cycle repeatedly without needing to be reset by parent or child. The VibraLite3 is not perfect, but it’s the best we’ve found so far. Highly Recommended.

How to Help the Kidney Kid


People ask our family every day “what can we do to help?” It’s an important question, with many answers. We are big believer’s in the idea of “think globally, act locally.” In that spirit, here are a few ways you can support Rory and kids like him everywhere.


Any family dealing with Chronic Kidney Disease or End Stage Renal Failure will tell you that this process is frustrating, overwhelming, scary and expensive. Those closest to us (primarily our friends & family) have expressed a desire to help and we have created this section for them. If you want to help, but cannot or do not to pursue living organ donation; we are always in need of financial and material help.

Here is a wish list of items that would be put to excellent use by Rory and our family:

- Grocery store gift cards, especially to health food stores where we can purchase vegan-style milks and cheeses, which are useful in helping us accommodate Rory’s dietary restrictions.

- Nintendo DSi and games, to play while in the hospital and on dialysis.

- DVD’s, that are kid-friendly to watch while in the hospital and on dialysis.

- Gas & Target Pharmacy gift cards, to help Momma and Daddy pay for prescriptions and gas to and from doctors appointments and the hospital.

- Respite Care:  come and babysit for an evening….please!

- Access to Alternative Therapies that insurance doesn’t cover like massage, chiropractic care and accupuncture.

- Playdates with families willing to accomodate special needs (see “respite care”)

- Gift Cards to Subway and Biggby, both of which are available to parents 24/7 at Children’s Hospital and taste much better than the cafeteria food.

- Dialysis Belts (size small) from this website

We are a military family on one income. Our current budget falls over $600 short of what we actually need to make ends meet and keep all the bills paid. If you don’t have time to shop or want to help with ongoing financial expenses please feel free to contribute directly by clicking the link below:



Children’s Hospital of Michigan is an amazing institution with some of the best doctors and nurses we’ve ever met. They mean the world to our family and many other families like ours. Please consider making a donation to support their work.

 Make A Wish of Michigan gave Rory the best gift anyone ever could: a whole week free from worry, stress, fear and pain. They granted his wish to go on the Nickelodeon Cruise last summer and our little boy has never been happier. If you want to help make wishes come true for critically ill children, click here.

Ronald McDonald House of Detroit provides a home away from home for parents and siblings of children being treated next door at Children’s Hospital. They staff is amazingly kind, loving and devoted to making the most difficult experiences just a little bit easier. If you want to learn more about how to help RMDH, click here.


At this point there is no cure for Hinman’s Syndrome. This means that while a kidney transplant will help to mitigate the damage already done to Rory’s kidneys; he will have to catheterize himself for the rest of his life in order to prevent future damage from occurring. Our family truly believes that it is possible to find the root causes of (and potential cures for) Hinman’s Syndrome.

The National Kidney Foundation is a leading advocate for education about and research into renal and urological disorders. If you do not wish to contribute to the Kidney Kid cause directly, you can always make a donation in his honor to the National Kidney Foundation of Michigan, our local affiliate which sends Rory and other children like him to Kidney Camp each summer. Click here to visit their website.

How to Be a Superhero in 3 Easy Steps


Did You Know…

- Nearly 70,000 people nationwide are on the waiting list for a deceased-donor kidney transplant?

- Unfortunately, there are less than 10,000 deceased-donor kidneys available each year.

- Today, more than 6,000 people per year become Living Kidney Donors.

- Of these Living Donors, 1 in 4 is NOT biologically related to the Recipient.

- Kidneys are the most commonly donated organ, but…

- Other organs can also be donated including lobes of the lung, partial livers, partial intestines and even parts of the pancreas!

- Research indicates that Living Donor Transplants often last twice as long as deceased-donor kidneys and result in shorter hospital stays and fewer complications.

- Are you Jewish? YES YOU CAN be an organ donor, click here for details!

At the end of their lifetime, an organ donor has the potential
to save or improve the lives of as many as 50 people!


 Step 2: Sign the back of your license and/or put a signed organ donor card in your wallet.

 Step 3: Talk to your family about your wishes- make sure they know how important it is for you to save lives.

That’s all there is to it! How does it feel to be a Superhero?

If You Would Like to Be a Living Donor for Rory:

If you are interested in being a living donor for Rory, please know that the transplant team will only test one potential donor at a time. We used to have the forms available for download from this site, but have been informed that we are no longer allowed to post the .pdf files. If you would like more information about the process, or would like to receive the initial volunteer donor forms via email, please contact us at barnerfamily (at) gmail (dot) com

Gift of Life Ribbon

Are YOU a Superhero?

What’s Up With Rory?


The Urinary Tract System

The Urinary System


What Is Hinman’s Syndrome?
Also called Non-Neurogenic, Neurogenic Bladder, the underlying causes of Hinman’s Syndrome are unclear. The end result  is a bladder that contracts and does not let go- leading to what would (in most people) feel like a constant need to “pee.” People with Hinman’s Syndrome don’t recognize this feeling though, since to them, it’s the way their bladder ALWAYS feels. This can lead to a build-up of urine in the bladder, which often results in fluid backing up into the kidneys which, when undiagnosed, can lead to kidney damage- just like it did in Rory. When people with Hinman’s Syndrome DO pee, it’s not a result of their bladder naturally contracting and releasing like a healthy bladder- it’s the end result of a bladder so full of urine it literally cannot hold any more. The end result of this constant build up of urine was:


Chronic Kidney Disease
CKD can result from any number of illnesses, genetic conditions or injuries, but the end result is the same: sick or damaged kidneys that are unable to properly clean toxins out of the body. This can result in further illness and, if left untreated, even death. In worst-case scenarios, like Rory’s,  CKD will cause End Stage Renal Failure. On the bright side,  CKD and even End Stage Renal Failure, is manageable with special diets, medication and:


There are two types of dialysis. The first is called Hemodialysis and involves making multiple trips to a hospital or dialysis center during the week (missing school or work to do so) in order to have medical personnel connect you to a machine that does what our healthy kidneys usually do- filter the toxins from the blood. Thankfully, Rory does not need to miss school in order to recieve his dialysis treatments. Instead, his Mumma and Daddy perform nightly Peritoneal Dialysis (PD) at home. Every evening at bedtime, Rory is hooked up via a short tube placed in his belly to a machine roughly the size of a suitcase. All night long, this machine fills his abdominal cavity with sterile fluid, which sits in his belly and filters the toxins from his blood via osmosis through his peritoneal membrane. This process takes roughly ten hours per night, which means Rory’s family must be very mindful of time management or else he’ll be late to school the next day! Recieving dialysis treatments can leave Rory feeling nauseated, sleepy and cranky. Thankfully, he won’t have to be on dialysis forever, because he is waiting on a… 

Kidney Transplant
Rory has been on the transplant waiting list since November 2009. He almost got his new kidney in February of 2010, but the doctors found a small defect in the donor organ that made them decide it was not the right kidney for Rory. So, he is still waiting. When they are possible, kidney transplant’s can alleviate much of the symptoms of CKD and allow the recipient to lead a relatively normal life, free of the strain of dialysis and many dietary restrictions. In order to mitigate the potential for further damage that Hinman’s Syndrome can cause, Rory now has to perform:


Rory has been catheterized for over two years now. At first, he had a foley catheter. This was not as bad as one might think, but it wasn’t a great long-term solution. So, in September of 2008, he had a suprapubic catheter placed through his abdominal wall and into his bladder. He HATED the “SP” catheter….it was painful and not at all fun. Just imagine how it would feel to be a nine-year old boy who has to go through second grade carrying  a bag of his own pee!

Thankfully, in May 2009 was able to receive a Mitrofanoff Catheter. Over the course of a 9+ hour surgery, our Urologist bisected Rory’s right ureter. The top half (connected to his kidney) was routed over the left ureter so that now both kidneys drain through the left ureter. Then, the bottom half of the right ureter, which is connected to his bladder, was joined to the back of his belly button, where a small valve was created. Now, Rory can self-catheterize through his belly button; eliminating the need for permanent catheter tubes, daytime urine collection bags and everything else that makes life not-so-fun. It was hard to be a kid, when he had to carry a bag of pee everywhere he went; or when he had a painful tube protruding through his tummy. Now, Rory is pain free and much more mobile! If you are interested in exactly what a Mitrofanoff is, please view the slide show below: