Link to Help For Harlie

The Valdezs: Stephanie and Gabe, as well as their entire family, are fighting JDM, juvenile dermatomyositis, along with Harlie. This isn’t just Harlie’s fight. Due to Stephanie’s exhaustion and extremely busy schedule, Stephanie gave Gina permission to write this blog as if she was Stephanie: Gina Szajnuk:  We continue to wait and wait for updates on Harlie’s care. We had her in treatment on Tuesday. It was an extremely long day. We had X-rays of her back taken because she is in so much pain. We just found out today that her X-ray came back good! She does not have any fractures. But why the pain? No one knows. There isn’t anyone on the planet like Harlie. There are other JDM patients. However, Harlie has fallen into the 1% that normal treatment for JDM doesn’t work. Her team of doctors are trying so hard to fight the battle along side of us. After her last treatment, we all realized that it was safer for Harlie to be home instead of at the hospital, eventhough she was bleeding internally through her urine. What? It’s better for Harlie to be home due to the risk of infection over trying to figure out where she is bleeding internally?  To be honest, it’s the most awful situation to every be in. I, as the mother, am completely responsible if Harlie lives or dies. My husband, Gabe, is completely supportive of every decision I make. He is my partner, my best friend and the very best father. BUT. As the mother of Harlie. I am the ultimate decision maker. I gave birth to her. I nurtured her…along with my other two beautiful daughters. Gabe and I were married young. We had our babies and we thrived. We actually ROCKED it.  I was able to be a stay-at-home mother for all three of my daughters. I did my job. I prayed and I kept them safe. In one instance, our perfect world changed. Our perfect family, changed.

Now, how do I continue on? I’m angry. I’m not angry at anyone. I’m angry that this is my life. This is our lives. I’m angry that my daughter suffers in pain every single moment of the day. I’m angry because I suffer in pain every single day. My body is suffering more than I will share. Gabe is worried about me. My family and friends are worried about me. I am worried about me. As Gina has blogged lately, Rare and Life Isn’t Fair. However, I’m going to challenge the great big plan. I’m going to fight for my health. I’m going to continue to care for Harlie as well as my husband, my two daughters, my two grandbabies and my son-in-law. I am here for all of my friends, even the ones that do not want to bother me with their “big” problems. I have never NOT been there for my friends. I am still here. And… yes….I’m a little busy. So, I apologize if I do not respond to your texts, phone calls or your emails right away. I’m struggling to get up in the mornings. I’m struggling to clean my house. I’m struggling because our lives changed in an instant in August, 2014. We are raising our daughter now in a completely different light. As a once strong softball player, she is suffering pain that no one can understand. Not even Gabe and me. If you can continue to pray for her, thank you. If you can continue to appreciate the gift of walking and laughter, thank you. I have a lot more to say…but I’m going to go take care of my girl. Love you Harlie. Proud of you. I love you more than you will ever know. I love you to the moon and back and to the moon and back…. times infinity.

Much love,

Stephanie (Gina)

More news today from Stephanie:

Even better news…her blood work looks good too! Please continue to pray that Harlie keeps fighting JDM. I believe that Harlie will beat JDM. However, every day is a fight. Every day is a battle. Every day is a gift. I am living in the present. I am fighting myself with my own health issues. Rare is hard. Rare is not fair. Harlie is my role model. Harlie is my hero. I know I need to take care of myself. However, there is no a second in the day that allows me to do so.

The two videos of Harlie were taken last week.

Stephanie Valdez: So proud of my little fighter Harlie, even after a long day/ evening of treatments yesterday that make her feel horrible she still pushed hard in therapy today
So much determination to get stronger..
You got this!!! Xoxoxo

IMG_2750 from Gina Szajnuk on Vimeo.

IMG_2694 from Gina Szajnuk on Vimeo.