Nerissa Roberts (South Africa): A personal quest to raise awareness

My son Ezra was diagnosed with haemophilia just a few days after birth, when he was circumcised and the wound bled for several days. This is his story, and my journey to understand HOW to be a mother to a child with a rare condition. He is now almost 7 years old, and I have learnt to live with the daily obstacles we, as a family, face together.

When I heard the word haemophilia for the first time, my heart broke a million times. I was a first-time mom and dealing with the normal challenges, plus the unknown implications of a special-needs baby, I was in severe shock for quite a while. Doctors and nurses at the Charlotte Maxeke hospital were so helpful and supportive, but I felt completely lost in a sea of information. Those first few months are a haze of tears to me.

Getting in touch with other moms and people with haemophilia on our Facebook support group opened a world of hope to me. I started getting involved with the South African Haemophilia Foundation and, as such, got involved in the lives of many parents in the same boat as me. My extended family of bleeders has really made a positive impact on my life.

I’m lucky because my son can live a normal life. We just need to take the necessary precautions. Ezra is just like any other boy: he loves chess and reads a lot!

When something like this affects your daily living, it is natural to want to tell people about it. And this is a good thing. Raising awareness is a personal quest for me. I even had one of Ezra’s bruises tattooed on my arm. This is a great tool – people often ask me what happened to my arm, with shocked faces, and I take this opportunity to tell them about haemophilia.

I know that we were lucky to get a diagnosis so quickly. In South Africa the statistics of undiagnosed boys are shocking. These boys, mostly in rural areas, get many bleeds and end up with critical permanent injuries, which could so easily be prevented if the people around them had known about the condition. This really makes me sad. I wish I could do more to reach out and spread awareness.

For now, we live in hope, and in peace. Haemophilia is quite manageable, especially if you have access to medication. I am thankful for this. Sometimes still resentful, but mostly filled with hope for a future without worries about falling, bruising and other injuries that are bound to happen to energetic young boys!

Nerissa Roberts, Ezra’s mother, shared her story with us as part of our ‘Get+involved: share your story’ series to celebrate World Haemophilia Day 2020.