Story of Hope – Weiss Family

Emma’s story began in the early summer of 2022. As we had been spending time with her and her family, we noticed, along with her parents, Emma was not her vivacious and energetic self. Concerns for her health mounted over the summer, and her parents began to search for answers. In the beginning, their concerns were mostly ignored – being told it was just growing pains or perhaps an isolated event. Regardless, they continued to press on and were eventually diagnosed at a local hospital with something more serious.

The local hospital recommended Emma be seen at Seattle Children’s Hospital, which was 4 hours away. The next few days were a whirlwind for Emma and her family. She was seen by a number of specialists in Seattle and endured a lengthy battery of tests and a muscle biopsy. This was a confusing and challenging time for Emma and her family – a hardship and a state of unknown they had never experienced.

Emma was blessed to have the loving support of both her parents and maternal grandmother throughout her hospital stays and various treatments. As much as we wanted to be by Emma’s side, we knew our purpose was to provide support and comfort to her two sisters – Avery (9) and Oakley (4). The girls deeply missed their sister, who was now 4 hours away and had many questions and concerns. 

An often-overlooked aspect of a rare disease like is the long-term toll it takes on the entire family. We knew Emma was facing serious challenges. We wanted to be honest with her siblings, but at the same time, we didn’t want to frighten them. With the resources provided by Cure JM, we were able to respond to their questions with a sense of hope and gratitude. Even though we weren’t on the front lines, we were grateful to provide support during this difficult season in any way possible.

Throughout Emma’s diagnosis with JDM, she received great care and treatment at Seattle Children’s Hospital.  She slowly gained back strength and is now on daily doses of prednisone, weekly methotrexate shots, and monthly IVIG infusions.  It’s been an adjustment for Emma and her family, but she is strong and courageous.

During her treatment and recovery, there have been many instances of hope on display. While on an outing in late August with her sisters, Emma discovered she could walk on her heels again, proof that her strength was improving. Another day while we were coloring, Emma had intoned she made a mistake on her drawing. In true ‘Emma form,’ she pivoted and confidently declared, “I fixed it with an even better version.” This anecdote reminded us all that her disease could be seen like this – What was once perceived as a mistake or challenge can be turned into something beautiful. Our personal faith in a loving God teaches us that we are perfectly and wonderfully made.  God created us with all our abilities and disabilities for His glory.  We must accept ourselves and trust God’s wisdom in creating us the way we are.In addition to our personal faith, Cure JM has been an invaluable partner as we walk through the challenges of this rare disease. We have been able to partner with Cure JM to help raise awareness and fundraise within our sphere of influence and beyond. 

“Ask the Doc” – Sun Protection Tricks & Tips for Summer 2023

With summer underway, we are honored to share our latest “Ask the Doc” Town Hall on Sun Protection Tips and Tricks for Summer. In this session, Shelia Angeles-Han, MD, MSc, and Kalyani Marathe, MD, MPH of Cincinnati Children’s Hospital, share the importance of sun protection for JM patients.

Sun Protection Tips & Tricks: What Parents, Grandparents, and Patients Need to Know

Ask The Doc: Why Exercise and Nutrition Are Important In JM

We are honored to share this insightful presentation and Q&A on the importance of exercise and nutrition in treating juvenile myositis with Dr. Brian Feldman of The Hospital for Sick Children and the Cure JM Clinical Care Network.

What role does exercise and nutrition play in JM treatment? When should JM patients be cleared for exercise? What effects do exercise and nutrition have on disease outcomes?

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Cure JM supports families, patients, and the juvenile myositis research community.