Patient Advocacy Stories

BCDI celebrates the resilience and courage of the individuals that trust BCDI to treat bleeding, blood clotting and other blood disorders. Below, you will find inspiring accounts that highlight the challenges, triumphs and everyday experiences that our patients face.

Each story reflects unique journey’s of navigating life with a blood related disorder, and embraces the importance of the support, advocacy and education that BCDI provides to our patients through our comprehensive care model. See how our patients’ stories of strength and courage inspire our work, every day.

 

Liam Kraemer was born to Ryan and Kristi Kraemer on April 28, 2006, and 24 hours after birth, Liam had his PKU heel stick. It bled for several hours, which concerned nurses and doctors. Hemophilia was mentioned, but with no family history, that was not considered be and the family was sent home. After further testing, Liam was diagnosed with Severe Hemophilia A with less than 1% clotting factor at two weeks old. The next couple months were scary with all of the unknowns, but the Kramer’s were referred to BCDI and met Dr. Tarantino and the BCDI staff when Liam was one-month old. The Kraemer’s second son, Kolby, was born on November 11, 2010. Kolby was diagnosed with Severe Hemophilia A shortly after birth. “We feel our boys are living normal lives and we have nothing but gratitude and appreciation for Dr. Tarantino and the staff at BCDI,” Kristi Kraemer said. “They are like family to us and we appreciate all the work and research they do to provide our boys with the best care, as well as provide information to us as it becomes available. We love Dr. Tarantino and his team!”

 

Diagnosed with Immune Thrombocytopenia Purpura (ITP) at the age of 10, Stephen Kaufman has lived with ITP for over 70 years. Since 2017, he’s been a patient at BCDI’s ITP comprehensive care clinics. “BCDI has an incredible system ongoing,” Stephen said. “You’re not just seeing a nurse or Dr. Tarantino. You see a large number of specialists in different disciplines and they check you out in various parameters. Dr. Tarantino and his team really look after me that in in my dealing with ITP, I just couldn’t ask for a better situation than that. It’s the kind of care we all want seek, and it just couldn’t be better.”

 

After being diagnosed with Immune Thrombocytopenia Purpura (ITP) at age 11, there were more questions than answers for Ally Carlton. But after more than a decade of dedicated care at BCDI, including participating in a clinical trial, Ally’s ITP is now in remission. “I think that’s what makes BCDI so different- all the programs to make having this the most accessible thing for people,” Ally said. “It’s been really cool to be able to be on a study drug, have it be successful and then watch it save lives and help other people. What Dr. Tarantino has grown, developed, and continues to grow is pretty much lifesaving for anybody that walks through those doors. I think he’s phenomenal, I think he sets the standard for healthcare.”

 

In May 2020, then 10-year old Mariah Nolte began noticing a large number of bruises on her legs. As a state-renowned gymnast, Mariah was used to having some bruises. But due to the COVID-19 pandemic, she was not actively competing or practicing. That’s when her parents, Nicole and Joe Nolte, took action. After numerous tests, Mariah was diagnosed with Immune Thrombocytopenia Purpura (ITP), which is a not uncommon bleeding disorder characterized by a low number of platelets in the blood. Since September 2020, Mariah has received comprehensive care at BCDI’s groundbreaking ITP clinics- the first ITP comprehensive clinics in the United States began at BCDI in 2017. Over the past four years, Mariah’s ITP diagnosis has greatly improved and has allowed her to live an active life in school, where she participates in track & field, dance, tumbling and scholastic bowl.