Cure MPS1 Project
Cure MPS1 Project
Titus is a lively, courageous little boy whose laughter and hugs light up every room. Born on March 26, 2019, Titus was diagnosed with MPS1 just weeks after birth, altering the life his family had envisioned. Despite his challenges, Titus approaches every day with joy, resilience, and determination that inspires everyone who meets him.
The Barrett-Weber family—rooted in faith and fueled by hope—has dedicated their lives to fighting for Titus and helping other children like him. Their journey reflects strength, love, and an unwavering commitment to making a difference.
Titus was diagnosed with MPS1-Hurler Syndrome just weeks after birth, thanks to newborn screening. This rare and devastating disease affects almost every part of the body, caused by the body’s inability to break down specific sugar molecules. These molecules build up in tissues and organs, causing severe physical and neurological symptoms.
Treatment for MPS1 is complex and requires lifelong medical care, including enzyme replacement therapy, surgeries, and ongoing monitoring. While treatment can slow the disease’s progression, it cannot reverse the damage already done. For Titus and others like him, finding a cure is critical.
MPS1 is a progressive genetic disorder that leads to the buildup of toxins in the body, affecting the brain, heart, and other vital organs. Without proper treatment, the disease rapidly impacts growth, development, and quality of life.
Titus’s journey began with weekly enzyme replacement therapy (ERT) at just five weeks old, involving a 3.5-hour drive to Cincinnati Children’s Hospital. In June 2019, the Barrett-Weber family admitted Titus for a bone marrow transplant, hoping to slow the disease’s progression.
The transplant journey was arduous. Complications led to ICU stays, a ventilator, and months of recovery. Titus endured feeding tubes, severe pain, and months of oxygen therapy before finally coming home just before Halloween in 2019.
Despite these challenges, Titus’s spirit never wavered. His smile and laughter are a testament to his incredible strength and resilience.
March 2019: Titus is born.
April 2019: Diagnosed with MPS1 and begins ERT.
June 2019: Admitted for a bone marrow transplant.
October 2019: Comes home after months in the hospital.
Ongoing: Post-transplant recovery, therapies, and surgeries.
Misconceptions About MPS1
It’s easy to think that Titus is ‘doing fine’ when you see his smile, but the reality is far more complex. Titus faces daily battles, including therapy sessions, specialist appointments, and the looming need for additional surgeries.
MPS1 is relentless and invisible, silently progressing and impacting every aspect of his life. Raising awareness and supporting research are vital to change the future for children like Titus.
The Kennedy Ladd Foundation is dedicated to finding a cure for MPS1. Titus’s story is a powerful reminder of why this mission matters. Your support helps fund research, provide resources, and bring hope to families affected by this cruel disease.
How You Can Help
Titus’s story is one of courage and unwavering love. You can make a difference in his life and others living with MPS1. Here’s how:
Donate: Every contribution brings us closer to a cure.
Share: Help raise awareness by sharing Titus’s story.
Pray: Join us in praying for a cure and strength for families on this journey.
