Wednesday, August 15, 2012

My 4-Year-Old Hero

"If you want your children to be intelligent, read them fairy tales. If you want them to be more intelligent, read them more fairy tales."
~Albert Einstein

My niece MacKenna is one of the most amazing people I have the privilege to know. She puts truth in the statement – wise beyond her years. She is a thinker, an innovator, a creator, a leader and she is only four.

In 2011, MacKenna started to experience pain and visible swelling in her knee and joints. After months of doctors’ visits and unanswered questions, my sister and brother-in-law turned to the Minnesota Children’s Hospital staff for answers. It was at that time she was diagnosed with Juvenile Rheumatoid Arthritis (JRA), which is a term used to describe a type of arthritis in children. It is a long-term (chronic) disease resulting in joint pain and swelling.

According to A.D.A.M. Medical Encyclopedia, the cause of JRA is not known. It is thought to be an autoimmune illness. This means the body's immune system mistakenly attacks and destroys healthy body tissue. JRA usually occurs before age 16 and symptoms may start as early as 6 months old.

The doctors put her on several medications, including a weekly shot which MacKenna calls “the poke.” To say the least, it has been a challenging couple of years for my family.

In good news, MacKenna went to Children's last week and was told that the arthritis was in remission. To stabilize her improved status, she will continue her medication for an additional year. The story below is based on actual events in MacKenna’s life. The names and some of the details are fictional, but for the most part this is a true story.


Written By Amy Carrier
The Proud Aunt of MacKenna Lynn Guptil

She had been looking forward to this day for months. Kylie could no longer contain her excitement. She swiftly opened her closet door and searched for the white box labeled “Halloween.” She stood on the balls of her feet as she extended her arms to the sky in attempt to reach the box. The small-framed 3-year-old was far from reaching the treasure, but she jumped in the air as a last ditch effort to reach it. Kylie lost her balance and tumbled into closet. The various toys, games and articles of clothing came tumbling down on top of her.

Her mother heard the commotion from the kitchen and came running into Kylie’s room. There she found an angelic face buried in a pile of stuffed animals and toys staring back her. Kylie’s soft blonde curls and indigo eyes made her seem like a fragile doll.

“Are you okay Kylie?”

“Oh yes Mommy, I was just trying to reach my costume.” Kylie pointed to the top shelf. “Can you PLEEAASSEE help me?” Her mother couldn’t resist Kylie’s smile, which stretched ear to ear on her petite porcelain face.

Her mother reached the Halloween box down and placed it on the floor between them. Teasingly she said, “Are you sure you want to open the box?” Kylie, almost bursting with excitement screamed, “Yes Mommy! Please open the box!”

Her mother opened the box to reveal Kylie’s princess costume. She had decided months earlier that she was to be Belle from Beauty and the Beast for Halloween.

Kylie dropped to her knees and reached into the box. She slowly pulled out a miniature dress that was covered in yellow and pink lace. It was a replica of Belle’s dress. Kylie held it up to her chest as she stood up and started spinning around the room. She stopped and looked at her mom with her cheeky little smile.

“I am going to be the prettiest princess in the land.” She squealed.

“Yes, yes the prettiest princess in all the land.” Her mother repeated trying to mask the quiver in her voice and the tear that escaped down her cheek.


The sun was setting over the neighborhood and the street lamps were starting to glow. Little Batmans, cowboys and Tinker Bells started to emerge from the beige cookie-cutter houses that lined the street. Kylie stood at the bottom on the stairs peeking out the window. She was a vision and a perfect tiny version of Belle. The yellow ball gown fit like a glove and she had the tiara and sequence Mary Jane’s to match. 

“Come on Dad, come on! There won’t be any candy left.”

He chuckled, “It’s okay Princess. There will be plenty of candy.”

Based on her level of excitement he expected to see Kylie explode out the door and run to the neighbor’s house like she had done the previous Halloween. However, she slowly made her way down the front porch stairs. Each step was a struggle. She would take a step with her right leg and then drag the left behind.

Kylie slowly made her way to the house next door where her friend Gracie lived.

“Trick or treat?” She yelled when Gracie’s dad opened the door.

He smiled, “What a beautiful princess. I didn’t expect a visit from Belle tonight.”

Kylie giggled, “It’s me Mr. Thompson! Kylie!”

“Oh my, I didn’t realize it was you. Well Kylie, you are a beautiful princess,” he said as he dropped a piece of candy into her orange pumpkin.

Kylie and her father visited a few more houses. With each step she moved a little slower and smiled a little less. Finally, she turned to her dad with an exhausted face.

“Daddy, can you carry me?”

“Of course princess.” He lifted her up and carried her to the next front porch. He set her down and Kylie limped to the door. She mustered enough energy and knocked.

“Trick or treat,” she whispered. By this time even her voice seemed tired.

After she received the candy, Kylie turned to her dad and motioned for him to come closer.

She leaned into his ear and whispered, “I just want to go home. This isn’t fun anymore.”

He scooped her up into his arms and she nestled into his chest. He could feel the warmth of her breath and the wetness of her tears as they walked home. He started to cry. They could no longer ignore the symptoms. They needed to find someone to help Kylie.

Halloween 2011 - MacKenna & Mason (my niece and nephew)

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