By Joycelyn Bila
On May 27 our third “Buffalo Cares” Care Walk was held at Ellicott Creek Park in Amherst to bring awareness of Cooley’s Anemia (thalassemia) and to raise funds to benefit the Cooley’s Anemia Foundation. All monies received by the foundation go toward research, helping patients and families and, of course, finding a universal cure.
The Care Walk was a success in that we exceeded our fundraising goal while bringing many people together for a fun day with pizza, prizes, face painting and a gift basket raffle.
Unfortunately, even though I tried to get their attention, the one thing missing was the media. Except for the local station, WBBZ, who I am extremely grateful to, we were totally ignored by prominent Western New York news stations and newspapers. Perhaps this is because as the Care Walk organizer, I am not a famous sports personality like Jim Kelly, nor am I a celebrity like Loretta Swit who wrote a book and brought attention to the issue of animal abuse.
Having been around sick and dying children for many years, I am empathetic to all who are suffering, whether human or not. Inasmuch as I am an animal lover and a compassionate human being, I am a mother on a mission. My mission is just as important to me as these causes are to those with the name and the means to get the attention from the media.
Thalassemia is a rare, hereditary blood disorder affecting between one and two thousand people in America. It is a chronic, congenital, life-threatening disease that is manageable through blood transfusions every two to three weeks as well as a daily intake of iron chelation medicine.
People with thalassemia must live this way their whole lives and be at risk for other diseases such as diabetes, osteoporosis, heart disease, liver problems, hearing loss and other issues. There are different forms of beta thalassemia that include thalassemia minor, intermedia and major, of which our daughter Josephine has the most severe form, thalassemia major.
Most people aren’t aware that they carry the trait and won’t know it until they have children. If someone with the trait has a child with someone else who carries the trait, there is a one in four chance that every child they conceive will have thalassemia major and be blood dependent for life. Knowing what this means, we are truly grateful and bless those who donate blood and give the gift of life.
It is a shame that not one news channel or newspaper thought it worthy enough to come and see what we were doing for the Cooley’s Anemia Foundation at the Care Walk. It’s a shame that they didn’t get to meet Josephine, a beautiful, successful young woman living in New York City, who despite the burden of living with thalassemia not only has a professional career as a web producer for a major financial TV network but has traveled around the world as an international motivational speaker and advocate for others with thalassemia. It’s a shame they didn’t get to meet Katrina, a Buffalo resident who, despite the challenges of thalassemia, just graduated from Canisius College and is continuing her studies to become a physician assistant.
These young women are just two of the heroes of the thalassemia community, a family knit together by blood and tears. Josephine and Katrina are not just survivors, they are “thal warriors” and “thrivers.” They are the reason we seek awareness. They are the reason we Care Walk, the reason we fight, the reason we need your attention, please!