I have been blessed to meet the most amazing rare children as well as their strong mothers and fathers. No one can truly understand what they go through on a daily basis. I was able to be with Stephanie and Gabe through their ER experience with Harlie this past week. I am honored to know this family. Harlie is struggling to make it right now. The doctors are struggling to help her right now. They are all wonderful doctors but they are stumped by Harlie. She falls into the 1% of not responding to her treatment for juvenile dermatomyositis (JDM).

Stephanie and Gabe are desperate to save their youngest daughter. The doctors here even reached out to a doctor that is the top specialists for JDM at the NIH. They followed her guidance for treatment for Harlie. Now that the treatment is not working, we are all in a the world of the unknown for Harlie. We are all scared. We are all praying.

We do not want this disease to progress any further. Her body cannot handle much more. She is extremely delicate and she is in a lot of pain. A lot of pain.

They put in a j-tube a few days ago. As of this morning, it’s not looking good. She is still vomiting. They are waiting for the GI specialists to see Harlie. She has lost so much weight. It is a very scary time right now.

We had a meeting yesterday at the hospital with a team that are all working together to figure out how to make her better. They sat there and looked at Stephanie and Gabe. Stephanie and Gabe looked at them. The rheumatologist apologized for not knowing what do to next. The GI specialists was unable to be there. The other medical staff members had no idea what we should do. We started to brainstorm nutritional ideas. However,  we needed GI there to help us come up with a plan.

Can they take Harlie home?  Will she be able to heal better at home? She is not getting better in the hospital. Her emotional state would benefit from being home. We all agreed that emotionally this is hard on the family on all levels. They have been living at the hospital. They have only had a few weeks at home over the past few months. However, if she keeps throwing up, then she cannot leave the hospital.

It’s a difficult situation for Stephanie and Gabe. It is a difficult situation for the doctors and the hospital. It’s the most difficult situation for Harlie. Harlie is stuck in the unknown right now. We need to get her out of there and on the path to recovery. We need her on the path of healing. We need her. We love her.

Please pray for Harlie and her family.