Kim: A Grandparent’s Story of Hope

My 7-year-old granddaughter, Emma, showed signs something was wrong at a family wedding in June 2022. Her normal bouncy, and energetic antics had given way to being overly tired and complaining that her legs kept falling asleep. Only a few weeks later, while on vacation in a small town in Eastern Washington State, Emma couldn’t even do more than a few runs down her favorite water slide, something that before she had done all day. Knowing something was not right, her dad took her to a local park and had her try the monkey bars, as this was something she easily did. She could not even hold her weight on the first bar.

Realizing something was wrong, her parents took her to the local emergency room, and the rest of her family started praying and googling. The amazing ER doctor on duty felt something more serious was happening than growing pains, tired muscles, or a virus. She took the extra steps to call Children’s Hospital in Seattle and, consulting them, determined that Emma needed to go immediately to Seattle for tests.

While Emma’s other grandparents watched her two sisters, I met my daughter and son-in-law at Children’s Hospital. As I drove the 90 minutes, I listened to multiple videos found on JDM and the Cure JM website. Hours of googling had led us to wonder if this ultra-rare disease, Juvenile Dermatomyositis, could be plaguing Emma. We prayed we would get answers and felt she was in good hands at Seattle Children’s. I felt God’s presence and a sense of unexplainable peace as I entered the large parking garage, not knowing where to find them. I walked through the doors closest to my parking space, and they were right in front of me!

They could have been anywhere in the gigantic hospital, but I felt God led me to their exact location. After an MRI, many blood tests and finally, a muscle biopsy, the doctors diagnosed Emma with JDM. They started treatment immediately, and she spent under a week there.

While in Washington, my sister and I could give her the weekly injections, but Emma and her parents had to travel to Seattle for the IVIG infusions. Emma’s treatments have been rough because she hates needles and is anxious about receiving shots and infusions. Her parents displayed amazing patience and love during this trying period as the family learned to support Emma through the treatments and help her adjust to this new normal. Thankfully, Emma has slowly learned to accept this as what must happen so she can get better.

In August, I was privileged to help the family transition back to their home in Arizona and establish care at Phoenix Children’s hospital. Doctors in Phoenix were amazed by her response to the treatments and started slowly weaning her off the prednisone. Emma was glad to be feeling well enough to start school with her sisters, Avery and Oakley. A few weeks later, they welcomed a new baby brother, Arrow, into their family. Their parents have juggled everything beautifully and even got insurance to allow the IVIG infusions to be done at home.

Emma had a flare in October and spent a few days in the hospital, and after adjusting her medications, she is doing amazing and even started playing soccer again!

Emma is blessed with a large, supportive family with grandparents in Washington State and Arizona. We are grateful for answered prayers and that the treatments are working. We also appreciate the Cure JM family for being a wealth of knowledge, support, and guidance. The grandparent zoom calls are a highlight of my month and knowing that I can reach out to this group with questions or just for a shoulder to cry on has been a tremendous gift.

My hopes and dreams for Emma and all nine of my grandkids are that they love God with all their heart, are kind and empathetic toward others, feel tremendously loved by their families, and face obstacles or challenges that come with a fierce tenacity and comfort that they are not fighting alone.

Cure JM Research Consortium Receives Prestigious Chan Zuckerberg Grant

The Chan Zuckerberg Initiative has awarded Cure JM and a consortium of Cure JM-funded researchers a coveted $2 million rare disease research grant to identify new biomarkers in JM and improve precise, personalized care through the identification of cell-to-cell interactions that drive inflammation in juvenile myositis.

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