In each issue of HemAware, we “Take 5” with people in the bleeding disorders community and spotlight their efforts with just five questions. Here, we talk to Sami Jankins, HemAware blogger, NYLI member and founder of the arts-focused nonprofit C.H.O.I.R. Stars. Jankins is 25 and has hypogammaglobulinemia and a clotting disorder. She lives in Milwaukee.
C.H.O.I.R. Stars is an arts-based nonprofit. What is your background in the arts?
I got involved in the arts when I was about 4 years old. I was a high-energy kid, and my parents wanted to keep me focused. I started with piano and vocal lessons, and from there went on to be in children’s theater productions. I majored in theater at the Peck School of Arts at the University of Wisconsin-Milwaukee.
What does C.H.O.I.R. Stars do?
One of our main projects is giving musical instruments to kids in hospitals. We’ve done ukulele drives for the Children’s Hospital of Wisconsin in Milwaukee. These instruments are theirs to keep. While they’re in the hospital, kids often get teddy bears and small toys, but I wanted to give something to kids that they can continue to use as they age, something that could maybe become a part of their lives. We donate to a lot of long-term patients who are in the HOT unit, which stands for hematology, oncology and transplant. We had the cast of Hair visit the hospital, and we’ve also provided free tickets to dance productions and shows like Wicked for kids who are well enough to go. After Wicked, the cast met with the families for about a half-hour to answer questions.
Why are the arts important for kids with chronic illnesses?
I think the arts are important for everyone. I’ve spent a lot of time in the hospital, and music always helped me get through it. Also, I’ve talked to kids who have chronic illnesses who were interested in music or theater and felt discouraged from participating. When you have a chronic illness, you can miss a lot of school. Your energies are supposed to be spent making up your core classes and not, for example, singing in choir class. But the arts have always been such a powerful and positive outlet for me.
Can you tell us about your chronic illness?
I have hypogammaglobulinemia, a genetic immune deficiency. During childhood, I got a lot of infections—sinus, ear, upper respiratory, pneumonia. I was on multiple courses of antibiotics because these infections would last much longer than they would in a healthy person. When I was 17, I developed my first blood clot while on treatment for the immune deficiency. Since then, I’ve developed numerous blood clots. I had to go to Duke University Medical Center in Winston-Salem, North Carolina, to their hematology division because a lot of the aspects of my clotting disorder are pretty rare, and because I don’t respond to anticoagulation treatments. So I’ve clotted on almost all clotting meds that should be stopping it.
What’s next for C.H.O.I.R. Stars?
I would love to expand it outside of Wisconsin. I have a lot of connections in the Broadway community, so I would like to expand it to other states. I love the ability to spread the arts. We’re willing to go wherever there is a need and an interest.