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Learning, Advocating, and Giving Back One Step at a Time

Updated: Nov 15, 2023


Hey there, fellow moms and warriors in the journey of life, parenthood, and the world of medical mysteries. I'm just like many of you, navigating the winding paths of motherhood and striving to provide the best for my child. In my case, my little one, Jo, is living with primary lymphedema.


Let me be clear from the start: I'm no expert, no medical guru, and certainly no millionaire. I'm just a mom. And you know what? I wouldn't have it any other way. But it's exactly being "just a mom" that's led me on a unique path to advocacy and community support.


When I first heard the term "primary lymphedema," I was met with a flurry of questions and confusion. The road to a diagnosis was rocky, and just like you, I had my share of tears, sleepless nights, and unanswered questions.


It's important to recognize that even as a mom, I don't have all the answers. I'm continually learning and evolving on this journey. Jo's condition throws me curveballs, and despite my best efforts, I sometimes hit roadblocks with her care and treatment. But you know what? That doesn't stop me from pushing for advocacy, awareness, and the need for specialized shoes for children with primary lymphedema.


Why? Because there's a fire inside of me that says, "Don't wait for the change; be the change." I saw a need, and I knew I wanted to be part of the solution. That's how Jo Rising Foundation came to be. It's a way for us to support children and families living with this condition. Our long-term goal is to make the shoe aspect of primary lymphedema care, less of a scavenger hunt.


This disease, and caregiving for it, can be incredibly isolating at times. The odds of someone in your own community struggling with it are rare. That's where social platforms come in. They're the lifelines that connect us, providing a virtual space where children and their parents find the companionship and support they crave. I want to make sure everyone feels a sense of friendship and support.


But here's the deal: With me, you won't find "professional verbiage," nor will you see the struggles of my own journey hidden behind a facade. I want to keep everything transparent and raw. The good and the bad. Because I am just a mom.


I'm not here to preach from an ivory tower of knowledge or experience. Quite the opposite. I'm here to share the ups and downs, the struggles and triumphs, the tips and tricks I've learned along the way. But I'm also here to learn from you.

You see, in this journey, I've discovered an incredible community of mothers just like me—mothers who love fiercely, who advocate tirelessly, and who support wholeheartedly. I've learned from you, and I've been inspired by you. We share stories, we lend an ear when someone's had a tough day, and we lift each other up when the weight of this condition seems too heavy.


So here I am, "just a mom" who also happens to have a child with a complicated disease. And I want you to know that you can be part of the change too, in your unique way. You don't need to have it all figured out, and you don't have to be wealthy. What you need is a heart full of love and a willingness to make a difference, no matter how small.


Let's keep learning, keep supporting one another, and keep pushing for change. Together, we're a powerful force.


With love and strength,

Jamie


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