Hallie is a sweet, smart, and enthusiastic child with a very rare disease, Diamond-Blackfan Anemia (DBA.) DBA is bone marrow failure. Hallie’s bone marrow doesn’t produce red blood cells, which are essential for survival, as they carry oxygen throughout the body to the organs and brain. Hallie is alive today because of doctors, medicine, and blood transfusions. And, of course, her courage and inner strength.
As Hallie will tell you in the beginning of all her speeches: her favorite color is purple; and she has a puppy named Linus and she is searching for a bone marrow match.
Right now, Hallie is healthy enough to attend school, and she is a very proud Girl Scout and avid seller of cookies. And, since her father is a Marine, she is also a huge proponent of Project Troop to Troop where people can donate money to send cookies to our soldiers. And, she’s not afraid to ask for a donation!
But at any time our lives can, and will, change. Hallie is on steroids, and potentially borrowed time. Once she becomes steroid resistant, which is what happens, she will be dependent solely on blood transfusions, which she will need at least every 3 weeks.
In February of 2015 four DBA patients passed away. And, Hallie went into action! Hallie decided that she wanted to become an advocate for the 14,000 other people waiting and hoping to find their bone marrow matches, and the less than 800 others with DBA. She wanted to speak for the kids who were too sick to speak for themselves. She wanted to use her voice. And she has. Her first speech was at a fundraiser to help fund the DBA Foundation for research for a cure. She was 6. And, she was amazing.
Using Hallie’s compassion as our example, Hallie’s Heroes was born. Hallie has touched so many people’s hearts, that when it was time to put a Board together, the community rallied around. And, Hallie began giving speeches on a very regular basis. She learned sections from Dr. Martin Luther King Jr.’s “I Have a Dream” speech and crafted an entire message around advocacy for others. She has presented in front of over 5000 people more than once, encouraging the audience to register to the bone marrow registry. And in 2016, Hallie became the youngest spokesperson ever to represent DKMS-US whose mission is to “delete blood cancer.”
Hallie is an inspiration to so many. I am proud to say that Hallie’s Heroes has swabbed over 3,000 people in 2 years and we just found our 16th match for other families! Hallie has quite literally saved lives. She has given second chances to patients in need, and to their families who want more time with their loved ones.
People often judge others by what they see. Yet, we all know looks can be deceiving. Invisible illnesses are real and they are heartbreaking. Hallie is changing the perception of what “sick” looks like. And, she’s doing an amazing job.
