11/27/2025
I recently had the honor of taking photos for Amelia Myers and her beautiful family, and with the family's permission, I’m sharing her story to help spread awareness for a condition that few people truly understand.
Amelia was diagnosed at age 9 with Metachromatic Leukodystrophy (MLD) - a rare, terminal brain disease that took her family over a year to get answers for, despite seeing many specialists. For me, this isn’t just another photography moment. As a mom of a daughter living with a rare condition, I know firsthand how isolating, confusing, and emotionally exhausting this journey can be. Many people don’t see the behind-the-scenes, the searching, the waiting, the uncertainty, the advocating. Families like Amelia’s carry more than most will ever realize.
This Thanksgiving, I’m choosing to share Amelia’s story because awareness matters. Early newborn screening matters. Compassion matters. And lifting each other up matters.
Please take a moment to learn about Leukodystrophies and the importance of newborn screening - it can truly save lives and shorten the long diagnostic odyssey that so many families face.
🌟 Learn more: BabysFirstTest.org
🌟 Follow & support Amelia’s journey: Linktr.ee/ameliaonetoughcookie
To the Myers family, thank you for trusting me with your story and your moments.
This holiday season, may we hold our loved ones a little closer and remember that every day is a gift. 🍁
