On February 2,2012 Patrick J. Bell and Jonah P. Bell were born as fraternal twins in Indianapolis, In. During the new born screening, Patrick was diagnosed with Sickle Cell Disease – SS. Patrick at the age of 6 months received his first blood transfusion due to a sickle cell crisis. As parents, we cringed each time when Patrick had a crisis or had to give blood via a needle to his head due to the more pronounced veins. Living in Indianapolis was not an ideal place for children with Sickle Cell due to the cold climate and there was not at the time a big sickle cell population. A physician suggested Hydroxyurea to reduce the severity of SCD; but we were apprehensive about the medication.
In 2013, we decided to put Patrick on the medication; which resulted in less crises. In 2013, a physician from Children’s Hospital of Atlanta was a panelist at Indiana University Sickle Cell Disparity Conference. As his mother with a background in Public Health-Infectious Diseases, I was intrigued about the topic and attended. That particular physician was beacon of hope about Sickle Cell and Bone Marrow Transplantation at CHOA. Of course, Atlanta is known to have large population of individuals who have the disease. The cutting edge technology and research that was being conducted at CHOA sparked our curiosity that it was a possibility that our son could be cured of this disease.
The cutting edge technology and research that was being conducted at CHOA sparked our curiosity that it was a possibility that our son could be cured of this disease.
We remained in contact with that particular physician and attended the annual Sickle Cell Day at CHOA. We walked into a village of families that could relate and compassionate physicians who had a genuine interest in this disease as well as educating us on cure through bone marrow transplantation. Of course, any major procedure/surgery raised concerns and apprehensiveness. However, the team at CHOA subsided those anxieties. While living in Indianapolis, we made another visit to CHOA to speak with the BMT team. We were given an extensive discussion about BMT and that as a family we would need to have blood drawn for Human Leukocyte Antigen (HLA) testing to see if we could be a potential donor. Being a twin is a blessing, because his fraternal twin brother, Jonah was his perfect match!
As a family, we made an executive decision to relocate from Indianapolis, Indiana to Atlanta, Georgia to give our son a better and hopefully a “regular/cured” life of Sickle Cell. CHOA connected us with an excellent Pediatrician with extensive knowledge about the disease and appointments with the Sickle Cell Clinic at the Aflac Cancer and Blood Disorder Center located at the Children’s Hospital of Atlanta. During our many visits with a Sickle Cell doctor at CHOA we decided to embark on the journey of Bone Marrow Transplantation. With extensive testing and regime, Patrick was able to receive his transplant on Wednesday August 27, 2014. During our stay and post transplant, CHOA BMT unit has become an extended family to us. We have been advocates to spread the word about our experience and why others should choose CHOA BMT.
