I met Harlie the night we took Bertrand to the Utah Jazz game. Harlie was there with her family. Her mother, Stephanie, and I exchanged information. My heart hurt when she briefly told me about Harlie’s devastating health issues. I recently logged into Facebook, which is not the norm for me. I read Stephanie’s update on Harlie. My heart hurt even more. I went to visit Harlie in the hospital the next day. We need to help Harlie. I want to help her as much as I possibly can. Here is her story…written by her mom.

Hello, I am the mother of Harlie. She is 13 and has been healthy all of her life and very active playing accelerated softball and basketball.  About 7 weeks ago she started feeling sick with muscle aches and extreme tiredness with weakness and some nausea. I took he in to her pediatrician and she told me it was a virus going around and she will feel better in two to three weeks. Four days later, she complained of loose of eye sight and vision getting blurry. I took her in to Primary Children’s Hospital and her 20/20 vision was now 100/20 due to her retinas being swollen and fluid behind the retina. Her ck levels were 21,000 and her arms were tight from swelling. They tested her for just about everything under the sun.  One evening in the hospital, they got 29 vials of blood. They did an MRI and said she has myositis. They wanted to do a muscle biopsy and said we will know right away if she has juvenile dermamyositis. She spent 3 weeks in the hospital getting testing and steroid pulses as well as ivig fusions and they started giving her methotrexate shots. She came home very weak. She was unable to even turn her head or body in bed. We are still waiting for a diagnosis from biopsy three weeks ago. The doctors say she has some symptoms of JM but not showing the typical symptoms and the first pathologist on biopsy was inconclusive. They sent it to the NIH to be seen. She started getting sores in her mouth and on her tongue so bad to the point she had a hard time eating and drinking or taking her meds.  I’m not sure if this is a side effect of the medications she’s on or could it be a part of the dermamyositis???  She was admitted back into the hospital last week and put on IV fluids and getting her meds through IV.  I’m worried about all these meds they have her on and not getting a definite answer is she has dermamyositis. She seems to be getting weaker and can’t walk but a couple steps at a time without getting exhausted. I’m not sure what else to do…