Kim’s Story: 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.
Another Grandma’s Story: 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.