Over the past month, I’ve connected with other parents walking the same road as us—families with children battling rare diseases. Like us, they are part of the same groundbreaking program, waiting for their child’s individualized medicine to be created for their ultra-rare conditions. While each diagnosis is unique, we are forever bonded by this journey and our shared determination to fight for a cure.

We are beyond grateful that our children are in this program and on the path to receiving treatment. But as that day gets closer, reality sets in—this could come with some cost. The thought of raising a significant amount of money in less than a year is daunting. My faith is BIG, and I believe it’s possible, but I also know it’s going to take a lot of work!

A couple of days ago, I felt led to reach out to an advocate, hoping to find grant opportunities to ease the financial burden. She was an immediate blessing—offering support, guidance, and encouragement. She helped me set up this page, reminding me that while I had just run a birthday fundraiser for our rare disease foundation, this is different. This is for Marley. This is to ensure that when her treatment is ready, we have the funds ready to give her the chance she deserves.

The same day the fundraiser was created, I sent a message to close friends and family, asking them to join Team Marley by sharing this fundraiser. So many lovely messages and additional shares have happened since then. Thank you!! I’ll be using this page as a personal blog to document our journey—every challenge, every victory, and every step toward making Marley’s miracle a reality.

To those who have already shared, donated, and sent love our way—thank you from the bottom of my heart. Your support means everything.