Advocacy

Rebecca: A PKD Story

Chronic disease pkd

Today, I’d like to introduce a new Category: Center Stage. Here I’ll be featuring people that their endurance and resilience makes them extraordinary! On this first one, I’ll have in the spotlight a little girl named Rebecca aka Becky. Besides being my daughter, is an extraordinary strong little human.

Rebecca, Beyond Her Years

Rebecca was born 4 weeks earlier to her due date. Along with her twin brother, they didn’t have any apparent problems beside being preemies. She was the smallest one of the two. Before being released from the hospital, she had to pass some test. Failed one, the hearing test and was let go on a condition of having her hearing check.

Twins brother sister newborn
Rebecca with her twin brother Matthew.

In the following week, she was having trouble keeping her temperature up and being able to poop. Two weeks into her life and she was diagnosed with PKD (Polycystic Kidney Disease). The ultrasounds, blood drawings, blood pressure checks, urine tests started. Her weight was only 5 pounds. A tiny little body that even preemie clothes were big for her.

A flower does not think of competing with the flower next to it. It just blooms.

She cried, of course, but she went through her trials with remarkable stoicism. Strong and determined way beyond her age. With her courage, she gave her parents the peace they needed: everything was going to be okay.

By her first year, she was doing exceptionally well. Her cysts had minimal growth and no other problems had developed. She had been walking for some time now and babbling her thoughts. Happy and spontaneous as a baby should be. At two years of age, she is thriving. Having PKD hasn’t stopped her. She had developed timely. Not even a cold can stop her.

Do you know the size of your kidney?

A healthy kidney is about the size of a human fist. Now, imagine having a kidney of the size of a football and weighing up to 30 pounds. Almost incredible to think, uh? However, this is a reality that people living with Polycystic Kidney Disease (PKD) may face one day.

PKD is a disease that does not discriminates, it affects people no matter their race, nationality, gender, or social class.

Polycystic Kidney disease is defined by Brian Auday et al in the Magill’s Medical Guide seventh edition of 2014 as “a genetic disorder characterized by multiple, bi-lateral, grape like clusters of fluid-filled cysts that slowly replace much of the mass of the kidney, reducing kidney function and leading to renal failure.”

The symptoms include:

  • back pain,
  • urinary tract infections,
  • high blood pressure,
  • blood and protein in urine, and
  • kidney stones among others.

The cysts size range from as small as a pinhead to as large as a grapefruit.

There are two types of Polycystic Kidney Disease:

  1. Autosomal Dominant PKD (ADPKD) is the more common type and affect an estimated 600,000 Americans and 12.4 millions worldwide. 
  2. Autosomal Recessive PKD (ARPKD) is a rare form of PKD and affects 1 in 20,000 children and can cause death in the first month of life. 

The PKD Foundation provides information and support through it Local Chapters. Also, through Social Media you can connect with other families and become member of online support groups.  

Once you accept difficulty as part of life, and as an opportunity to develop a stronger self, a stronger mission, a stronger empathy, a stronger love, everything changes. ~ Brandon Burchard

Little Ms. B

As she grew, her personality started to show.  When she would focus on something she would go through. Nothing can stop her. Playful and spirited, she knows what she wants and will let you know about it. Determined yet kind-hearted.

Mickey Mouse is her favorite toy, you can always find him by her side. She likes to sing nursery rhymes and play peek-a-boo. Expert in hide and seek. Her favorite fruits are apple and grapes. Likes water but prefers sweet tea (hey she’s a southerner). Lego architect, a passion she shares with her twin brother.  A promoter of misbehaving especially when called to nap. Long warm baths are her thing. Pro runner, sprints around the house are her specialty. Mural painter, preferred technique: crayons.

Rebecca PKD mother daughter
Becky and mom “twinning” glasses.

Having a chronic genetic disease does not mean that you can’t live a full and meaningful life. Rebecca, or Becky as we dearly call her, is an example that you can overcome the obstacles.

My little girl teaches me every day what being strong and brave means. Her smile brightens my day and warmth my soul.

My little girl teaches me every day what being strong and brave means. Click To Tweet

Chronic disease Edel pace pkd

If you would like to share your story with the world, please email me to pacemaker@edelpace.com and let’s talk. You may be the inspiration someone is needing! 

Edel

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