Meet Oakley: A Little Boy with a Big Fight

This is my son Oakley, a five year old with  an adorable smile, who loves the Ninja Turtles, and you’d never guess what we’ve been through.

My little man has Prune Belly Syndrome and Kidney Disease. This is his #InvisibleFight.

After being blessed with four healthy children, I never would have thought that I would be the parent of a chronically ill child.  Chronically ill meaning something he will have for the rest of his life, something that would hide deep within his little body waiting to rear its ugly head at any time, something that has no cure.
No matter how much research and preparation you do, no matter how much you think you are ready, you aren’t.
My son Oakley was born with a rare and life threatening illness called Prune Belly Syndrome. This syndrome effects just 1 in 40,000 births and includes a host of different medical issues. For Oakley this means kidney disease, multiple surgeries, procedures, lab draws, and imaging. His kidneys and urological system were severely damaged due to a blockage of urine while in the womb. He also has gastrointestinal issues he deals with on a daily basis. He has pain often, mostly in his stomach or on his sides. He fights to survive every day, but you wouldn’t notice that just by looking at him.

By looking at my son, he looks like any ordinary five year old little boy. He has light brown hair, big hazel eyes, and a contagious smile.

It’s what you don’t see that haunts me.  

nochoice (1)You don’t see the multiple imperfections on his once smooth belly. Each scar represents a surgery or procedure that he has had to endure.  Each scar represents his strength and a battle that he has fought. You don’t see the multitude of medicines that he takes or has tried in his short 5 years.  The trial and error, the vomiting, diarrhea, lethargy.

Things that people take for granted such as using the bathroom has been robbed from him. He is catheterized throughout the day and we leave a catheter in overnight to help keep the pressure off of his already damaged and swollen kidneys. It’s hard to sleep because he gets tangled in the tubing.

You weren’t there when he went on his Make A Wish trip battling an infection and felt so sick he couldn’t enjoy much. His sickness overtook a time that was supposed to be filled with nothing but dreams and magic.
He had one good day out of 7, not much magic there and not many good memories for him.

k1You don’t see the sadness on his face when I have to tell him that he can’t participate in an activity such as a contact sport….or the sadness in my heart. You don’t see the look on his siblings faces when they have to miss out on something because their brother has an appointment, is in the hospital or sick.

They hide the disappointment well, too well, and they shouldn’t have to.  The older boys have to sometimes miss football practice because I am hours away at a doctor appointment with their little brother. So, since they missed that practice, they don’t get to play much in their game on that Saturday.  So much unfairness, but they never complain.

k3I don’t need your sympathy I want you to realize that there are children fighting for their lives and though they may look normal to you, they are very sick on the inside. The tears shed every night are real tears for a real little boy fighting a real illness.
My son is so much more than his diagnosis but sometimes we need to focus on the many things that we deal with on a daily basis hoping that it will lead to more understanding about what it is like being the caregiver to a child with an invisible illness.
Written by Sarah, Oakley’s mother. Take a look at her and Oakley’s Facebook page and learn more about their journey.

Oakley and Sarah

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