About this iReport
  • Not verified by CNN

  • Click to view Amazingly's profile
    Posted July 22, 2014 by
    This iReport is part of an assignment:
    Living with a rare disease?

    More from Amazingly

    3 Year Old Boy Battling Rare Disease

    At 20 weeks gestation, we received news from the doctors that no mother should ever have to hear. I will never forget hearing the life-changing news: "We see some very bad things going on with your baby's kidneys and bladder. He might not take his first breath." We were told that her baby had the worst stage of Bilateral Hydronephrosis (urine on both kidneys) and Posterior Urethral Valves (PUV). In utero, his bladder was as large as his head. With little encouragement about Oakley’s chances of survival, doctors encouraged an abortion.

    We chose life.

    Oakley was born at 37 weeks gestation, and his diagnosis changed from Posterior Urethral Valves (PUV) to a variant of Prune Belly Syndrome. Prune Belly Syndrome affects 1 in 40,000 babies and presents with undescended testicles, kidney, bladder, and stomach muscle abnormalities. Most babies with this condition do not make it to their second birthday. Oakley has more stomach muscles than most children with this syndrome, so his diagnosis is considered to be a variant, and this has enabled him to sit and walk.

    Oakley has undergone several surgeries, and his progress has exceeded doctor’s expectations. He celebrated his third birthday this fall.

    Oakley’s doctors had predicted that he would need a kidney transplant by the age of two, but he is still going with his own kidneys at age three. He will still need a transplant, but not until he is much older. Rather than dwelling on the things that Oakley may not be able to do, his family looks forward to all the things he will be able to do.

    The miracle baby whom no one thought would survive has lived against the odds and made a positive impact on so many people in his life.

    I use my son's story to spread awareness about Prune Belly Syndrome, Kidney Disease, and the importance of Organ Donation.

    Oakley is facing yet another surgery this coming August, his most difficult yet. They will remove his appendix and attach one end to his bladder, the other to his belly button. This is so we can catheterize him through a stoma rather than through his penis.

    I never thought in a million years I would have to insert catheters into my child's body, watch him suffer, listen to him cry from painful procedures or hold him down when I am supposed to be the one to protect him from hurt and pain.

    He has taught me so much in his 3 short years about courage, strength, and bravery. He smiles every day and lives life, even with a urine drainage bag attached to him 24/7.

    He talks about his next surgery and tells us not to worry, that he is brave. It couldn't be more true. He is the strongest little boy I know.

    This October we are traveling to Disneyworld as Oakley's wish through the Make A Wish Foundation was to meet Mickey Mouse and go swimming.

    Oakley has endured so much, but still has such a long road to go.

    I worry about when he gets older. What are people going to say about him having to cath himself in order to use the bathroom. I worry about what people will think at school, on dates, at events.

    There is no cure for kidney disease, only treatments. We will continue to fight for a cure, spread awareness, and raise Oakley as he is a normal boy. We will not let his disease define him.

    You can read more about Oakley and his story at
    Add your Story Add your Story