06/22/2026
At the Boston Bleeding Disorders Center, we are privileged to walk alongside families through every stage of their journey. Today, we are sharing one mother's story in her own words.
"Twenty-two years ago, I remember the night around 2 a.m. when my son was diagnosed with severe hemophilia B. Earlier that day, Dr. Ellis Neufeld said, “I’m not leaving until we figure out what’s wrong with your son.”
Hemophilia wasn’t something we talked about publicly. It was something we lived every day. What people don’t see behind this moment are the years of infusions, bleeds, hospital visits, and countless prayers that carried us here.
On June 3rd, at 🏥 Mass General Brigham, Malachi Harris, a student Bridgewater State University received HEMGENIX gene therapy 🧬CSL.
For more than two decades, our lives revolved around treatment schedules, specialty pharmacy deliveries, insurance approvals, clinic visits, and prophylactic infusions. For nearly 18 years, I administered those 💉 infusions myself before helping him transition to self-infusion.
Because Malachi also has autism, there were times he didn’t fully understand the risks involved in certain activities. As a parent, I was constantly weighing two difficult questions: Do I let him do the things boys naturally want to do and risk him getting hurt, or do I say no and risk limiting his confidence, independence, and life experiences?
Every parent wants to protect their child. Parents of children with bleeding 🩸 disorders know that sometimes the hardest decisions are choosing when to step in and when to let go.
Through every challenge, I held onto the belief that one day he would be healed. I didn’t know what it would look like or when it would come, but I never stopped believing that God would make a way.
Eleven days ago, we witnessed it firsthand. Praise God 🙌🏾
I am deeply grateful to the physicians Stacy E. Croteau, Nathan Connell, nurses Maura Padula, researchers, specialty pharmacy teams, and advocates whose dedication helped make this moment possible ❤️
Most of all, I am proud of Malachi. His resilience, perseverance, and determination have inspired me every step of the way 🙏🏽
For every family navigating a rare disease journey, keep believing. Some prayers take years to unfold, but hope is never wasted."
-Towanna Lowe-Harris
