Treatment for Dylan

Dylan O’Brien was born with Prune Belly Syndrome/ Eagle Barrett Syndrome. Prune-Belly syndrome, is a rare disorder characterized by partial or complete absence of the stomach (abdominal) muscles, failure of both testes to descend into the scrotum (bilateral cryptorchidism), and/or urinary tract malformations. The urinary malformations may include abnormal widening (dilation) of the tubes that bring urine to the bladder (ureters), accumulation of urine in the ureters (hydroureter) and the kidneys (hydronephrosis), and/or backflow of urine from the bladder into the ureters (vesicoureteral reflux). Complications associated with Prune-Belly syndrome may include underdevelopment of the lungs (pulmonary hypoplasia) and/or chronic renal failure. The exact cause of Prune-Belly syndrom
e is not known.

In Dylan’s case, he had a problem with his kidney’s. He had a ureterostomy as his bladder was non existent (it had a capacity of 5 ml). He had his left kidney removed soon after as it was too small and was affecting his right kidney. His other kidney is very large, full of enlarged holes but still somehow functioning. Undescended testes and much more.

However, from his first cry, we knew that Dylan was a fighter. He overcame the obstacles and at
age 7, he went in for what was termed a ‘major re-construction surgery’. This was required because Dylan was contracting many bacterial infections.  His bladder was not draining properly and his ureter tube was too large and floppy to push the urine out. As a result, urine was gathering in pockets and bacteria were growing and catheterisation was not getting rid of all of the urine.  As brave as ever, Dylan was wheeled into the surgery where his ureter tube was straightened, he underwent a bladder augmentation, had Mitrofanoff (tube made from his appendix to connect catheter to bladder
through the stomach) and he had additional layering removed from his tummy. The procedure was long and painful, but within few weeks, Dylan had forced himself to get out of bed and march down the hospital corridor to go home.

For one year, Dylan was bacteria free and was no longer required to take antibiotics. Things were as normal as can be, but after a while, something changed and the bugs were back. To cut a long story short, Dylan has been on antibiotics ever since and has been fighting recurring infections due to his bladder not being in a position to push urine out. He has had several operations in Crumlin and has been through so much.
Dylan has been fighting with PBS for 14 years. In the past year, things have worsened. Dylan has become immune to antibiotics and Crumlin hospital have told us (as good as they have been to us) that they are not sure what else can be done to fix this ‘mechanical’ issue. 

This was devastating news for the family and our next question was what happens next? If antibiotics are no longer working and the infections keep coming what will be the outcome? Through our research and with the support of our consultant in Crumlin, we found a centre for ‘phage therapy’ in Poland. Phage therapy Bacteriophages or "phage" are viruses that invade bacterial cells and, in the case of lytic phages, disrupt
bacterial metabolism and cause the bacterium to lyse [destruct]. Phage Therapy is the therapeutic use of lytic bacteriophages to treat pathogenic bacterial infections. Phage therapy is scientific and has good outcomes when tackling certain antibiotic resistant infections. It is our only hope to get rid of the infections causing Dylan so much pain and discomfort. Also, if we can get rid of the infections, his bladder will be in a position to rest and Dylan can be anti-biotic free thus reducing swelling in his bladder.


Anyone who has met Dylan will know that in the face of all that he has been through, he is the most positive person I know. He is always the one who brings laughter to the house, even if he has just come from hospital. He is a strong and resilient young man who has overcome the odds for all of his life.


We have been talking to various consultants and believe that we have found a place were Dylan can get some help. As you can imagine it is a long and expensive process. Although Dylan receives many of his medicines and medical equipment free, there are many products that we have had to purchase ourselves and these are quite expensive. We have received second and third opinions from various consultants and these have been costly. We are aware this is a time of great financial strain for everybod
y, but as we prepare to head to Poland for this potentially life saving treatment, we need assistance.

If you are in a position to help or know someone who can help us to raise the funds for Dylan we would really appreciate it. We are raising funds from friends, family and anyone who is willing to help. Thank you for your support.

Thank you for your prayers and for making a difference in Dylan’s and our lives as well.                    

Tom & Daniela