Ellen Stream’s love for her granddaughter, Brooklyn, fuels her commitment to the juvenile myositis community. When Brooklyn was diagnosed with juvenile dermatomyositis (JDM) at two and a half, Ellen faced a wave of fear. Would Brooklyn run and play like other kids? Could she enjoy school, sports, or friendships without the weight of infusions and flare-ups? Those early days brought uncertainty, but Ellen and Brooklyn’s other grandmother built a support system across miles, showing distance doesn’t dim love.
Living in Washington state, Ellen was far from Brooklyn’s treatments at Lurie Children’s Hospital in Chicago. Brooklyn’s other grandmother, based in the Midwest, stepped in, attending medical appointments and providing hands-on support. Ellen, a former caregiver, found her own way to help. She began crafting handmade quilts for newly diagnosed JM families, offering warmth and encouragement through Cure JM’s community. Each stitch carried her hope for kids facing the same challenges as Brooklyn. Together, the grandmothers formed a team, proving that love and action bridge any distance.
Brooklyn’s journey wasn’t easy. JDM brought intense treatments, but Lurie’s care team, including a skilled physical therapist, helped her grow stronger. Now 13, Brooklyn thrives in middle school, playing volleyball, serving as a stagehand in her school’s drama department, and excelling as a student. Her JDM is inactive, though flares remain a risk. Ellen cherishes these good days, knowing Cure JM’s advancing treatments and connected medical community offer a safety net if challenges return.
Ellen’s quilts became a lifeline during the pandemic, comforting families navigating new diagnoses. Her generosity reflects the spirit of Cure JM, where every gesture strengthens our community. But Ellen doesn’t stop at quilts. She walks and volunteers in the Seattle Walk Strong event, to support Brooklyn and every child with JM. Though Brooklyn lives in the Midwest, Ellen’s steps in Seattle show that grandparents can make a difference from anywhere.
Walk Strong events, like those in Seattle, New York, and Pittsburgh, and other cities are about more than fundraising. They build connections among JM families, letting grandparents, parents, and kids share stories and find hope. Ellen’s presence in Seattle sends a message: distance shouldn’t stop you from joining. Whether you’re near your JM loved one or across the country, walking in a local event supports kids facing infusions, medications, and uncertainty. Ellen’s quilts and walks inspire others to act, no matter where they are.
Brooklyn’s progress reflects the power of community and research. Lurie’s care, bolstered by Cure JM’s support, gave her a childhood filled with volleyball and drama, not just hospital visits. Ellen knows a flare could change things, but she trusts Cure JM’s work, from funding clinic days to advancing steroid-free treatments, to keep families strong. Her quilts wrap families in care; her walks push for a cure.
Ellen invites grandparents everywhere to join Walk Strong. If you’re far from your JM grandchild, like Ellen, walk from home or in your local event to honor their fight. Register at curejm.org/walkstrong to connect with families, share hope, and support kids like Brooklyn. Every step and stitch counts in building a future free from JDM.
