Gabe Valdez

I believe we all have a purpose and a destiny to our lives .

It may not happen on your timeline.

But it will happen as long as you keep the right perspective, and believe it will happen.
Believe in your dreams and they may just come true.

Valdez

My name is Gabe Valdez and I am the father of a rare child.

Her name is Harlie and she is 14 years old.

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I have learned a few lessons in the last year

and a half of our lives and they are this:

1. Bad things happen to very good people, sometimes for no apparent reason at all.

2. Most people, even the ones you don’t think care might, really do care. They care about you, me and other rare kids like Harlie.

3. It is difficult to see all the opportunity life gives you until your looking back
It is virtually impossible to fully understand certain life circumstances until they have actually happened to you.

I would like to ask everyone to close their eyes and imagine for a moment August 16th, 2014.

We are celebrating Harlie’s 13thbirthday with friends and family and a barbecue in our backyard.

Harlie is a full-blown athlete that excels in anything she wants to do, whether it be playing softball, basketball or even playing badminton in the backyard with her sisters

She has always had competitiveness in her and when she lost it wasn’t always pretty.
Harlie was the smallest and youngest on the teams she played on, and many fans and parents were amazed at how small she was but they could see the fight in her. The week after her birthday, she attended a softball tournament in Idaho with her traveling softball team. At the tournament, I could see her laboring when she walked and noticed her feet flopping as she moved. I questioned her and she said she hurt. I thought maybe she was just tired from playing ball.

After that, she lost her appetite and seemed very tired so i took her to the pediatrician who diagnosed her with an unknown virus and advised us it would go away. The next day was the start of Harlie’s 8th grade year at Kearns Junior High. She came home telling us that her body hurt, she was tired and worst of all, she couldn’t see. My wife and I decided it was time to take her to Primary Children’s Hospital. We met at IHOP and I noticed Harlie wasn’t eating anything and said she wasn’t hungry. This was the first of many times I would experience a twinge of fear for whatever was going on with Harlie.

On the way to the hospital, Harlie was concerned that she would have to stay.

Tuff promised to stay with Harlie the whole time. When we get to the ER, they ran every test in the book.

Finally at 10 o’clock one of the tests come back. Her CK levels were at 21,000.

The normal range is around 175 so they admitted Harlie immediately and began pumping IV fluids into her to protect her kidneys and liver.

At one point, they removed 29 vials of blood from my baby.

After a month of being in Primary Children’s, Harlie was getting weaker,experiencing more and more body pain.

She couldn’t roll over, couldn’t sit up or go to the bathroom by herself. Tuffy and I were both staying at the hospital. I was waking up at 6am to go to work and wait for a call to hear what was going on with any tests or doctors, while Tuffy was at the room with Harlie to help her.

We wouldn’t allow any nurses to take care of Harlie because they didn’t understand how much pain she was in and they didn’t know where or how to touch her without hurting her.

As her parents, we assumed the responsibility for our baby.
The doctors finally wanted to perform a biopsy on her muscle in her thigh and asked if we would be okay with it.

At this point, all I could think was “Biopsy? What is a biopsy for?

Why can’t we just give her penicillin and she can get up out of that bed and we can all go home and resume our normal life?”

We were told that a biopsy would tell us exactly what was wrong with Harlie and so we agreed.

The day after that, Harlie had to get a g tube because she hadn’t been eating. Have you ever seen someone get a g tube? It’s not pretty. And to watch them do that to your child is nearly impossible. So now, Harlie couldn’t eat anything. She was now “NPO” which means she couldn’t eat.

I got a call from her one afternoon, “Hey dad can you please bring me a crispy bean burrito?” What do you say as a father? So, I got off work and rushed a crispy bean burrito to Harlie. I saw her smile when I walked in the door and knew she could smell it. I gave it to her, not knowing that a few minutes later we would hear Harlie choking, gasping for air and changing colors. We ran to her and rolled her over, patting her harder and harder until a piece of that burrito dislodged from her throat.

When the nurse showed up, I received a long lecture about Harlie not being allowed to have any food. That was one of the worst days for me.

After another six weeks, we finally got the results from the biopsy that was performed on Harlie. They had to send the results to a specialist named Dr. Ryder with NIH. Her verdict was a rare, life-threatening disease called Juvenile Dermatomyositis (JDM). Juvenile Dermatomyositis is a disease that causes the body to start attacking itself and eating away at the muscles and skin, which explained all the pain Harlie was in. She was being treated with over 1000mg of steroids, along with oxycodone, morphine and finally Dilated.

We had a 13 year old daughter who was in so much pain We couldn’t even hug her without hurting her.

She couldn’t lift her head, couldn’t walk or sit up. She developed ulcers on her knuckles, chest and back of her arms. She was basically a 110 pound newborn.

Tuffy and I were praying that our baby could just feel better and couldn’t imagine how Harlie was feeling.

The doctors recommended Cytoxin which is a chemotherapy drug. They would administer it for 45 minutes and then flush Harlies’ system for 6 hours.  The Cytoxin made her so sick and the long hair that she loved to curl and braid was falling out. Harlie developed “bed foot” from laying down so much that she had to have casts to make them normal again.

She was in and out of rehab over two hours a day to try to learn to walk, sit up or raise her arms. We would get sent home for a couple of days but a fever or rash would send us rushing back to the emergency room. Harlie has endured hundreds of IV’s, G-tubes, Broviachs and every kind of pain med you can imagine.

On one of the trips home, Harlies sister decided to take her to get her haircut. We didn’t want to let her go but we reasoned that she was a 13 yr old child who had been cooped up in the hospital for months. We wanted to let her feel normal so we let her go. When they were leaving the salon, her sister took her eyes off Harlie for a second and Harlie tripped and fell and hit her head and hip on the ground with no strength in her arms to catch herself and ease the fall .

When they got home, Harlie told us she had fallen and was having pain in her right leg and head back to the emergency room we go .
It turned out that she had fractured her hip and they had to put three screws in it to keep the bones together.

After many more days and nights and emergency room visits , Harlie was finally able to come home.

What a relief it was to be off the little couch, out of the hospital where me and tuff slept for over a year taking turns sleeping on our back and the other on there side .
And no cafeteria food.

And in November 2015, Harlie got her Make-A-Wish to go to Orlando Florida to Disney World.

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And what a blessing it was with the ongoing financial burden of medical bills.

Our entire family spent two weeks out there, Harlie in her wheelchair but when we got back, Harlie was able to walk full-time!

Harlie still endures treatment once a month, IV steroids and IVig but at least we’re home. She is going to school one day a week and hopes to return to full-time school.

As I’m speaking, Harlie is supposed to be trying out for the Kearns high school softball team, but she is here with us today and hopefully we can make it to Tuesday’s try-outs.
It has been a long road in a very long journey for our family.

It’s impossible to tell you everything that has happened in our life but those of you with rare children know exactly what it’s like to be at the hospital for days ,weeks ,and months.

We would like to thank Gina and Justin Zanik and the Utah Jazz.

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Dustin & Aleshia Valdez for everything they’ve done

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C’era Valdez for holding down the fort when we were gone for over a year Kathy and Mike Evans for always coming to visit Harlie on their lunch breaks.

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Thank you to the softball community for their support, and we thank our friends and family for their support and their prayers.

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Coach Maggie from the University of Utah softball team, thank you.

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But most of all, I’m thankful to my wife for always being there for and with

Harlie everyday at the hospital you 2 are the strongest and most loving people I know and I’m blessed to have you in my life .

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I know the day will come when me and Harlie are on the softball field. I’ll be coaching third-base and Harlie will come up to the batter’s box and she’ll put 1 foot in the box and look down the line at me at third-base and I will give her the sign as she steps in that box.

As the pitcher winds up and throws a fast ball right down the middle of the plate, Harlie will swing and crush the ball out to centerfield. She runs to first and rounds the base and picks me up at third, while I’m screaming “Harlie!” and waving her to keep coming to third. as she’s passing second and on her way to third I tell her get down she slides under a tag and pops up from the ground. Then I lean over and whisper in her ear,
“I love you Harlie, welcome back.

Run hard.
Run fast.
Just run.”
Rare Undiagnosed network

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Stephanie wrote this today: Yesterday I took Harlie to softball tryouts and watched nervously from my car. I saw her struggling when they started to run and it broke my heart because she never had struggled with anything when it came to softball and then as I watched her I saw something amazing, instead of her struggling I saw her determination and fight.. The fight song came on at that moment and I thought to myself this is Harlie taking back her life, taking back what the disease had taken from her.. It was only a few months ago she was in a wheelchair but had worked so hard to regain her muscles and now I am a proud mom of a Kearns Lady Cougar!!!
She made it!! So proud of you Harlie Valdez 💕😘💕
Your biggest fan
Mom

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For More on Harlie Valdez’s Journey

About the author

Gina

Gina began working tirelessly as an advocate for the rare and undiagnosed diseases community several years ago after her and her family moved to Utah. She is the Co-founder and Executive Director of the Rare and Undiagnosed Network (RUN), Chair of Utah Rare, and Utah Ambassador for National Organization on Rare Diseases (NORD).

Gina is currently undiagnosed and the mother of three children with an undiagnosed genetic dysfunction. She is advocating for clinical whole genome sequencing covered by insurance companies and hopes to help rare and undiagnosed families emotionally and financially.

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