Tiam is 22 years old. He is the uncle of Bechael, a 21-month boy who has been diagnosed with sickle-cell disease. He tells us how the disease has intruded in the family’s daily life.
“One day, my sister came home after receiving the results of her neonatal test. She went directly to her bedroom in tears, without saying a word. It was her first child. She had just found out that he had sickle-cell disease.
I had heard about this disease for the first time in the 4th year of school, but it was nothing more than a myth for me. The birth of my nephew turned this myth into reality. This disease is a burden. You don’t choose it, you just have to get on with it.
With the help of support groups and with time, my sister now accepts the situation and has learned how to manage it. The entire family has helped and supported her in Bechael’s care, whether for taking his medicine, his diet, or his appointments with the pediatrician. We share responsibilities with my sister. It’s important for loved ones to be involved.
I only hope for one thing: that Bechael lives for a very long time, is able to follow higher education, find a job and get married. I dream of him living the same as everybody else. “