About Rose

Charlotte Rose is the adorable and indomitable little peanut that is at the heart of our mission. She is both kind and fierce, sweet and intense. I don't think we ever intended to use her full name, but she was born quiet and with such a commanding presence, she required both. At present, she rarely finds the time for silence, she is still remarkably insightful, funny, and thoughtful. 

At five, she wants to be a vegetarian (veterinarian). She loves her stethoscope and always leaves medical appointments laden with medical supplies gifted by her amazing nurses. The first to declare that she is alright after a fall, she is also the first to notice signs of pain in others and to offer comfort and sympathy - or a hello kitty band-aid, which is really just as good.

At 2.5 Charlotte Rose was diagnosed with a rare and severe form of muscular dystrophy called Limb Girdle type 2C. Because the disease is progressive, right now she looks and behaves almost normally. But her mobility is temporary, and by ten, she will likely lose the ability to walk. On paper, MD is a "painless" disease, though anyone who lives with it will tell you the opposite. It is painful and fatiguing. I often see discomfort in her face after walking a long distance. I am in awe of her strength and resilience; she smiles through procedures and touches my face and tells me she's ok.

About Resilience

"She's still Charlotte, and Charlotte is perfect", her pediatrician told us. We were meeting with him when we got the call that they had a diagnosis. He was trying to calm me down, but his words have been really instructional. It's easy to see all of the bad in a diagnosis, especially one as scary as muscular dystrophy, but it's hard to see what you still have. It's nearly impossible to separate what is paralyzing from what is, and always has been, an infinite source of light. 

"She's still Charlotte" is more than an awareness that she is the same person. That she is still funny, and bright, and bossy. The words are also a reminder to never forget where her light originates. She is the source of her own light. Miraculously and thankfully, she doesn't need anyone else to be all of the things she is; she is independently illuminated. She doesn't need me to express it, but she needs me to amplify it. 

So that's what I do. And that's how we manifest resilience. We make finding joy the most seriousness of business. We make more cupcakes and we always use sprinkles. We wear tutus in the mud and we don't care. We put glitter on as much as possible and instead of being frustrated when it ends up everywhere, we are happy that we made something else sparkle, too. We changed the way we look at our life. I thought it was my responsibility, as a parent, to raise an adult. I don't have that privilege anymore, but what I do have is the brightest light I have ever known and she deserves every opportunity to let it shine.

About Rose + Resilience

Rose and Resilience is a handmade, heirloom quality, bow company that is designed for both parents and kiddos in mind. Kids (and adults) love to express themselves, and we love creating fun and functional bows and clips that your kiddos will love.

Though Rose and Resilience was started as a way to raise awareness for LGMD2C, pay for Charlotte’s considerable medical bills, and find a space to be creative, Rose and Resilience and its community has become so much more than that. Through our bows and community we have not only been able to amplify our founding mission, but we have been able to lend our voice to other causes and beneficiaries, as well. We have been, and continue to be, grateful for the opportunity to spread kindness, generosity, and support in tandem with spreading awareness of LGMD2C.

In 2024, Rose and Resilience decided to put all its efforts into funding a clinical trial through Virginia Commonwealth University Children’s Hospital and the Johnson lab. While we have waited for a company to start trials for 2C, we have realized that it isn’t financially feasible for a company to treat diseases as rare as LGMD2C. However, it is possible to fund a clinical trial through a lab and serve this patient population for up to ten years in trial status. We periodically make lump-sum donations to VCU Children’s as 100% of the purchase price of items under “The Brave Campaign” go to this effort. We also support the Dion Foundation, which does the same.

Our calendar is constantly moving, so if you want the latest news, launch updates, and other goodies, sign up below. As our commitment to curing LGMD2C is inextricably linked to this venture, we will also update with news about clinical trials, drug approvals, and their impact on Charlotte, as well.

Our Team