Elinor: A Grandparent’s Story of Hope

Elinor, A Grandparent's Story of Hope, with grandson and dog

My grandson, Connor, was diagnosed at a very young age. Since he was two years old, he has struggled with rigorous and invasive treatments. From then on, we knew he needed to have all his family’s love and support, now more than ever.

Life hasn’t been easy for him, and it breaks my heart to see him learn to manage and cope with incredibly stressful situations. Nothing that I would want my grandson to face in his young life. Like many other JM families, I have felt hopeless and powerless to make a difference, as I know I cannot make all the stressful situations disappear. But I know I want to be there for him and be someone he can depend on.

With all the love in the world, I do my best to help fundraise for Cure JM. I am hopeful that the talented and capable researchers will transform the funds raised into something that will improve my grandson’s future and the future of other kids with JM. Even if I cannot dedicate time to bigger and grander events, I try my best to support our JM kids as best I can.

Currently, Connor is doing better and is much stronger. He is now a teen, and even though he receives IVIG every four weeks, he enjoys the little things in life. It warms me inside to hear him talk about his friends, interests, and opinions. One of my favorite moments is seeing him enjoy bike riding. While this doesn’t mean he is completely free of tough moments, I am thankful to be with him on his journey and proud to see him come so far.

Like many older kids, Connor is very private about his diagnosis and thinks seriously about what kind of future lies ahead for him. Since he was diagnosed so young, he can’t remember life without hospital visits and treatments. Whenever I hear that he has some doubts and fears for the future, I do my best to encourage him. I do my best to keep that spark of hope alive.

It’s true that this disease can be mentally and emotionally taxing, but with the power of my words and my love, I cannot help but believe that he can make great things happen in this world.

Through me, I want Conor to find the courage, strength, and support to keep fighting. He is my inspiration, and so, in turn, I will inspire him.

Parrish’s Story

We would like to introduce a one-of-a-kind, competitive, and determined young man, named Parrish. His story of resiliency and hope is one that will resonate with many of us in the Cure JM family. Parrish faced many challenges in his journey with JM, but found hope and support in his family and the Cure JM community. We are pleased to now share his experience to help others facing the same struggles during Myositis Awareness Month.

Balancing Work and Caregiving: Strategies for Working Parents of Children with Juvenile Myositis

Balancing the demands of a career with the responsibilities of caregiving is a challenging task for any parent. For those with a child diagnosed with juvenile myositis (JM), a rare autoimmune disease affecting children, the challenge is heightened. Juggling work commitments while providing the necessary care and support for a child with JM can be taxing. In this article, we hope to provide you with a few effective strategies and insights to help working parents navigate this delicate balance.

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