Volunteer Spotlight: Joycelyn Bila Brings Buffalo Community Together for Care Walk In Memory of Michael LoCurto
April 25, 2018 – CAF launched our “Volunteer Spotlight” Series two years ago to highlight the stories of some of the many selfless volunteers who play a major role in making our work possible. We are truly grateful for all of the love and heart-felt effort each of our volunteers puts into organizing awareness events, blood drives and fundraisers, and we thank them for their commitment to improving the lives of individuals with thalassemia.
Joycelyn Bila is hosting the fourth annual Team Buffalo Care Walk in Buffalo, NY on June 3. Joycelyn began organizing this walk in honor of both her daughter Josephine Bila and in Katrina Wagar. This year, the Walk is dedicated to the memory of Michael J. LoCurto, who died this past December at age 46 due to complications related to thalassemia. We thank Joycelyn for sharing her story with the community, and for her dedication to educating the community about thalassemia through op-eds in newspapers, appearances on television news, and through the Buffalo Care Walk. To join Care Walk, visit bit.ly/carewalk2018.
CAF: Could you tell us about yourself and your family?
I (Joycelyn) live in Buffalo with my husband of forty-three years, Nicolo. We have two beautiful, grown daughters; Josephine and Gloria. I am an artist and writer and my husband, a some-what retired home improvement contractor. I met him through his friends who were dating my friends, while in high school.
CAF: How did you learn that you are carriers of beta thalassemia?
When I was seventeen I started becoming weak and jaundiced after months of treatment with iron and B12 injections My general physician was very concerned since he couldn’t figure out what was causing this. After being hospitalized, I was seen by a hematologist who performed a bone marrow test to check for thalassemia. The test results showed that I was a carrier of the thalassemia trait and therefore, had thalassemia minor. When Nick and I got married, we were told there was a chance we could have a child with thalassemia, so we went for genetic counseling. That was when we found out he carried the thalassemia trait as well. When I got pregnant there was concern that the baby would have thalassemia since there is a one in four chance that could happen with every pregnancy. We were devastated when Josephine was born with thalassemia major.
CAF: What were the biggest questions, concerns and fears you had about raising a child with thalassemia?
First, no one on either side of our families had ever heard of thalassemia never mind anyone ever having it. It was very frightening to think that our child needed blood transfusions to survive along with learning about all the challenges she would face, physically and emotionally. We wondered what would life be like for her as a child with, what was then and perhaps even now, considered a disability? How would she go to school if she needed to have blood transfusions? Would she be able to keep up? How would other children treat her? What if she gets a fever or any kind of illness, what will be the outcome?
CAF: What challenges did you face?
I remember when Josephine started kindergarten she had an enlarged spleen. The teacher, knowing Josephine’s condition and that she had thalassemia, wouldn’t allow her to play on the playground. The teacher would hold her hand and keep her on the side while the other children played. Josephine cried as she told me about this and I was heartbroken for her. I was so angry at the teacher, but I realized it was ignorance. I immediately went up to the school to explain to her that they should be careful, but never treat her differently or ostracize her in that way. Thank goodness my husband was able to go to work and I was blessed to be a “stay-at-home” mom which allowed me to be there for Josephine, as well as Gloria, and tackle these kinds of situations head on.
We faced many other challenges, including having to take Josephine from doctor to doctor as a baby. We wanted to find the right doctors to diagnose and treat her. When she had to go for treatments I remember driving long distances to the hospital through blizzards and major traffic jams. We worried about her getting sick from a virus or other infection which could be life threatening as well as putting her through surgery and other medical procedures. It was so heartbreaking to learn that we couldn’t even donate blood for her, ever, because we are thalassemia trait carriers. It was very tough to see your child trying to “fit in” with other children, often pretending there was no illness, or her being ostracized because of it. These challenges were very stressful, fearful and frustrating. It’s still sad to realize there is no universal cure but I rely on my faith to get me through.
Unfortunately, we didn’t find out about the Cooley’s Anemia Foundation until Josephine was in her late teens so it was a challenge for us to not have other parents in the same situation to talk to as we watched Josephine deal with this on her own because she didn’t know anyone else with thalassemia. These were the days before we all had computers, smart phones and social media. One other challenge was wondering if we wanted to take the chance on having another child who could possibly be born with thalassemia. We decided to place our trust in God and six and a half years after Josephine, I gave birth to our daughter, Gloria, who miraculously doesn’t have thalassemia. She is not even a carrier of the trait.
CAF: Your daughter Josephine is on the CAF Board of Directors and is a great advocate for the thalassemia community. You must be very proud of her. What have your greatest joys been parenting a child with thalassemia?
One of the greatest joys is seeing how Josephine could grow and blossom despite all the challenges which not only included having thalassemia but the normal everyday challenges every child must face in keeping up with their peers. Just getting through a school day was sometimes difficult, but she persevered and went on to receive a Bachelor of Arts degree as well as a Master’s Degree in Social Work. We know we have done the best we could to make sure she had the best care and everything we could do to provide as normal a life for her and her sister. We are beyond proud of the woman Josephine has become. Watching her grow from a shy, insecure child into this beautiful, talented, educated and profound human being is an amazing blessing. To see her impact on the thalassemia community around the world is inspiring and brings tears to our eyes. Not only is she a true thalassemia warrior in every sense of the word, she is our hero.
CAF: What made you decide to begin your own Care Walk? Your Care Walk is honoring both your daughter Josephine and the late Michael LoCurto. Could you tell us about Michael and why you wanted to honor him in this way?
I decided to begin my own Care Walk because, having a child with thalassemia, it is a cause close to my heart. I wanted to do something to help bring awareness to the community about the impact thalassemia has on those who have it, especially since most people have never heard of it. I also want to make sure we are getting the info out there in support of the CAF to ensure that every child, parent and family dealing with thalassemia has this important resource to help them. I also feel it is my way of bringing the community together in an important but fun way, while giving back to the thal community and helping those affected. Organizing the Care Walk led me to befriend two thalassemia families up here, the Wagars and the LoCurtos. Michael LoCurto was a Buffalo native who was well loved not only by family and friends, but by the community he served as a Buffalo Common Council Member and Deputy Commissioner of the Erie County Department of Environment and Planning. Michael’s parents came out to help with the first two Care Walks with Michael being able to attend one. They were also visitors to our home and our connection through thalassemia makes us all one family. He was a remarkable, brilliant, funny, caring individual who did much to help rebuild his community and the businesses there as well as fight for the underdog. My family admired him very much although we wish we had gotten to know him better. He, like Josephine, went out into the world to make a difference. We always hold the Care Walk in honor of Josephine, as well as Katrina Wagar, but this year we are holding it in Michael’s memory, not only because he was a thalassemia warrior, but since his death, thalassemia has been spoken about on all the news channels and in all the articles written about him. His family wants people to know that this blood disorder exists. People need to listen and something needs to be done to find a universal cure. No parent should have to say goodbye to their child whether that child is a toddler, a teen or an adult.
CAF: What is your greatest hope for people with thalassemia?
My greatest hope is that people with they understand that, even though they have thalassemia, it does not have them! We always told Josephine that she can do and be anything she wants to be because nobody is more special than her and thalassemia doesn’t define who she is. I hope people with thalassemia do their best to live their best lives and be their best selves despite it, because they are stronger than they know. They are thalassemia warriors!
To support the Team Buffalo Cares Care Walk, visit this link.