Cure MPS1 Project
Cure MPS1 Project
A Diagnosis That Started with a Mother's Instinct
Finley’s journey began with joy, love, and the hopes every new mother holds. But early on, Brooke—Finley’s mom—knew something wasn’t right. She noticed a bump in Finley’s spine and kept hearing “it’s normal,” but her gut said otherwise.
At just four months old, Finley was seen by an orthopedic specialist at Riley Children’s Hospital. That visit changed everything. Within hours, they received a long list of findings: scoliosis, kyphosis, hip dysplasia, and a clubfoot. Soon after, a genetics team delivered the words that would forever change their lives: MPS I. Terminal. No cure.
“I just collapsed. They were still talking, but I didn’t hear anything,” Brooke shared. “I just kept thinking—they have to be wrong. She’s perfect.”
Brooke was a single mother, in nursing school, just 24 years old. Overnight, she had to become a full-time medical decision-maker and fierce advocate for her daughter.
Following a swift referral to Cincinnati Children’s Hospital, Finley began enzyme replacement therapy (ERT) and was admitted for bone marrow transplant in June 2019. At just 9 months old, Finley received a lifesaving transplant from a live donor overseas—a man who wrote to say he would always be there for her.
While the journey included intense moments (including a near-PICU admission for suspected sepsis), Finley’s transplant went relatively smoothly. After months living in a hospital room and then at the Ronald McDonald House, they returned home in November 2019.
In this emotional and honest episode of the Rising Up Rare podcast, Brooke shares Finley’s story—from that first gut instinct, to making medical decisions alone, to the deep strength she’s found in community.
“If I give up, who fights for her?” —Brooke
Now six years old, Finley is spunky, smart, and deeply loved. She has ongoing orthopedic challenges and is preparing for hip and spine surgeries. But she’s thriving in ways no one imagined in those early days.
In October 2024, Brooke made the brave and proactive decision to restart enzyme replacement therapy at home. Despite limited data, she followed her intuition—and multiple expert opinions—and now administers Finley’s weekly infusions herself.
“She actually handles it better when I do it,” Brooke shares. “The numbing cream is what she hates most—not the needle. That’s how strong our kids are.”
Her Favorite Weekend of the Year
Finley and Brooke are beloved parts of the Kennedy Ladd Foundation community. They attend the annual Run for Awareness and Wiffle for a Cure each year, and it’s the weekend they look forward to most.
“If we ever miss it, just know the world is on fire,” Brooke laughs through tears. “It’s medicine for us. To be with people who understand, who love our kids—it’s everything.”
Watching Finley play with other MPS1 warriors, unburdened and joyful, reminds everyone why this fight matters. “Our kids don’t know it yet,” Brooke says, “but they’re going to need each other for life.”
“Some days I still feel overwhelmed. I carry all the decisions. I question myself. But I keep going because I’m her person. I’m the one she looks to for safety and strength. I would tell any newly diagnosed parent: Trust your gut. It saved my daughter’s life. It will guide you too.”
How You Can Help
Brooke welcomes connection from other MPS1 families. She is passionate about helping parents advocate for their children, especially those navigating post-transplant life or considering enzyme replacement therapy.
You can make a difference in Finley’s life and others living with MPS1. Here’s how:
Donate: Every contribution brings us closer to a cure.
Share: Help raise awareness by sharing Finley’s story.
Pray: Join us in praying for a cure and strength for families on this journey.
