“We received the best care from the best transplant team”

"We must accept finite disappointments, but we must never lose infinite hope". - Martin Luther King, Jr.

On January16, 2019, our world seemed to be falling apart - the world my wife, Helen, and I had built. The day began with another visit to the emergency room, the fourth since the diagnosis of SCD at our local hospital five weeks earlier. The doctor was feeling Kamdili's fingers, which were swollen from dactylitis, when I got the message on my cell phone. The HLA (human lymphocyte antigen) typing performed on our other two children showed that they did not match Kamdili's HLA.

After Kamdili's SCD diagnosis, we vowed to search for a cure wherever it could be found in the world. But the results of my children's HLA typing shook our resolve. Numerous hospitals in North America, Europe, and Asia that we had spoken with and were willing to perform a bone marrow transplant (BMT) declined when they learned that our family did not have a matching sibling donor for Kamdili. Haploidentical bone marrow transplantation, which was the only way to cure Kamdili of SCD, was novel and on trial. Not many hospitals offered this treatment. So we were thrown back into an almost hopeless state.

"Hope is when you can see the light despite all the darkness" - Desmond Tutu.

However, I kept researching on hospitals that could offer any sliver of hope for a cure, and by chance, I read an online Indian news article where I learned about Dr. Lawrence Faulkner and the Cure2Children Foundation. When I received a response from Dr. Lawrence Faulkner to my email inquiring whether Cure2Children offered haploidentical BMT, a huge weight fell off my shoulders. Dr. Lawrence showed so much empathy and consideration for our plight, which we had barely seen for months since diagnosis.

Dr. Lawrence Faulkner offered us the opportunity to have free HLA typing performed by DKMS Germany. We had spent thousands of dollars a few months earlier for HLA typing of all our three children. But this time, Helen, Kamdili and I we got the typing done for free.

Once the HLA typing results were in, our family worked with Cure2Children Foundation and Sankalp India Foundation to plan our trip to India. Upon our arrival in Bangalore in November 2019, the journey for Kamdili's SCD healing in India began immediately. Kamdili had the best health management until the day of the haploidentical BMT. I was selected as Kamdili’s donor and the bone marrow transplant was performed in February 2020.

The bone marrow transplant was successful and he is completely cured of SCD. During the 44-day stay in the BMT unit, the doctors, nurses, cleaners and hospital administration were on their feet around the clock. Every emergency is handled like a Formula 1 Grand Prix race. Every minute counts, and every procedure is double-checked for accuracy. There is no room for error or delay.

We firmly believe that we received the best care from the best transplant team in the world. From the bottom of my heart, on behalf of my wife Helen and our children Kamdili, Obinna and Ifedimma, I would like to say a big thank you to Cure2Children Foundation, Sankalp India Foundation, Dr. Lawrence Faulkner, the doctors, nurses, cleaners and hospital administration involved in the healing of Kamdili. We love you guys!!!

 Tochukwu S Onyeriri