Help Find a Kidney Donor for Ethan

Ethan is 3 years old, and has been on dialysis since he was less than one month old. He is in need of a kidney donor.  

To find out more information about living donation and testing to see if you are a match for Ethan’s new kidney please contact transplant coordinators at Lurie Children’s Hospital in Chicago, Illinois.

Katie - KRJones@luriechildrens.org - main email address.

Debbie - DKemper@luriechildrens.org - please cc in.

Ashley - AVoit@luriechildrens.org - please cc in.

The initial requirements to be a living donor are as follows:

  • MUST be blood type A or O, positive and negative do not matter
  • Between the ages of 18-50. Because they want Ethan's new kidney to last him a long time, they are strict about the 50-year cut off, it has been proven that after age 50 your kidneys start to lose function.
  • No major health problems.
  • Cannot be on any more than 2 blood pressure medications.
  • There are some other factors that may prevent you from testing and donation, but these are the initial concerns at the moment.

Ethan's mom has shared his story with us...

Ethan Smith was born on January 16, 2015 via emergency C-section due to his breech positioning and the fear of aspiration of meconium; little did we know that we would soon be part of the “kidney club”. He was immediately whisked to the special care nursery and put on oxygen and antibiotics to counteract the effects that any aspiration would have had. After 24 hours of antibiotics he had bloodwork taken to check for any signs of infection, and that was when we found out that our boy had a long, long road ahead of him; his results showed that he was in kidney failure. Within hours Ethan was transported to a hospital about an hour away and that is where our family spent four and a half months in the NICU before we were able to bring him home. Ethan’s official diagnosis came about 3 days after we transferred hospitals and we were told he had a kidney disease, but more specifically his disease is called bilateral renal dysplasia and means that both of his kidneys are severely under developed and misshaped.

At 10 days old, Ethan went under for his first surgery; it was for the placement of a peritoneal dialysis catheter, a small narrow tube into his abdomen that would help to keep him alive every single day. After giving that a few weeks to heal, he started dialysis and handled it like a champ! But, of course, there were some other complications, and like many kids and adults in kidney failure, he didn’t have much of an appetite. Sooner than we could process all the new information, it was time for surgery number two to place a feeding tube in his stomach to make sure that he was getting adequate nutrition. His third surgery was for a hernia repair, and surgeries four through seven were all either removals or placements of different dialysis catheters due to infections and or complications.

Ethan is on peritoneal dialysis for 9 hours each and every night; our family is so grateful that we are able to do this in the comfort of our own home and that we don’t have to travel to a dialysis center multiple times a week for him to receive therapy. During the day, he is a normal and happy toddler who is unbelievably smart and curious about the world. 

We are currently waiting for a kidney, either from a living or deceased donor. Ethan has been listed for about 2 years now and he has had 7 living donors test to donate, but unfourtinaly we have not found his kidney angel yet. Until that day, Ethan will remain on peritoneal dialysis and medications to keep him as healthy as can be!

Please help us spread the word to find a match for Ethan!  Follow his journey at www.facebook.com/Everything4Ethan