Ava Szajnuk and Harlie Valdez: We all said prayers today.
July 12, 2015:
Ava and Harlie met last October on the court of the NBA Utah Jazz. We watched this amazing family, the Valezs, in awe of being on the court. We had no idea why Harlie was in a wheelchair. I went up to Stephanie and said, “May I ask why your daughter is in a wheelchair?”
She explained that Harlie has JDM, Juvenile dermatomyositis. A very rare disease. And, Harlie falls into the 1% of where treatment is not working.
Little did we know that we would continue on this journey together.
Two years ago today, Ava received her shunt. We celebrated today for her shunt and how it saved her life. We talked about looking to the future and not looking at the past. We talked about focusing on what we do have and not what we do not have. For Ava, it means giving up the dream of swimming with dolphins. I promised it in her hospital room when she was dying but we had to cancel twice due to other medical issues.
We are thankful. We are not living in a hospital room. We are alive right now. We are very thankful.
We said a prayer for Harlie Valdez today who is struggling with her hip surgery from yesterday as well her head trauma. We said a prayer for a little girl that passed away early this morning. We did not know her or her family. However, seeing a rare child suffer or seeing a rare child die…words cannot express how much our heart hurts for them and their entire family.
We will continue to celebrate every year on July 12th. Ava is alive when other rare children are not.
We will continue to help other rare families like the Valdezs. Although we are currently only helping emotionally, we are helping. Imagine what it was like to see Harlie making such amazing progress in the last few weeks.
Imagine seeing Harlie go off to a NBA Utah Jazz basketball game with her sister and cousin.
Imagine having an official date night together in over a year while you knew she was safe with family. They felt like they were making progress. Stephanie has a full-time job taking care of Harlie. Harlie’s therapy schedule alone would make my head spin.
So, when Harlie fell, their world came crashing down. Keeping the disease away is one huge battle. Keeping Harlie safe is another huge battle. Harlie is so strong. We know she is a fighter and will continue on her journey to recovery. She is here for a reason. She has a future that is so important to over the twenty-thousand people that she has touched.
My worry is not only for Harlie but her mom, Stephanie. I know what it’s like to hurt for your daughter and your body suffers because of it. I pray that Stephanie breathes more. I pray for Stephanie to have so much support from all of her friends and family as much as Harlie does. I know too well that my body has suffered from my experience with Ava’s medical issues as well as Oskar and Lucy’s.
Stephanie and I have discuss how hard it is to look back at the close calls of almost losing our daughters. Unfortunately, Harlie has had more scares than Ava. However, it only takes one time to haunt you. Stephanie and I, as well as almost all moms living with a rare child, never have a day without fear of what is to come in the future of the unknown.
I pray for Stephanie as much as Harlie.
I say a thankful prayer for Gabe. He continues to be one of the best fathers and husbands that I have ever met.
I also say a thankful prayer that Ava and Harlie will have each other as they grow up. They were both born as healthy babies. And, their lives were both changed overnight with a rare disease.
Much love,
Gina
*The picture posted on the blog was from the night we met last October
*Ava, as a baby, is below in the pink hat
*Harlie, as a baby, is below in the Angel wings
