A rare dad’s journey: Inspiring change for the rare disease community in Rwanda
After his son’s diagnosis of Williams syndrome (WS), a rare genetic disorder, Manzi Ndamukunze founded Centre-Alliance in Kigali, Rwanda. Here, this dedicated rare dad shares his family’s story, and introduces the inspiring work of the rare disease organisation he founded
Written by Manzi Ndamukunze, founder and managing director of Centre-Alliance
Every parent’s wish is to have a healthy child. Sadly, for us, this wasn’t the case. Nineteen years ago, eight months after giving birth to our first child, we found out that our son, Algas, has Williams syndrome (WS), a rare genetic disorder that affects many parts of the body.
Signs and symptoms of Willams syndrome include mild to moderate intellectual disability; unique personality traits; distinctive facial features; and heart and blood vessel problems.1
The delay in detecting the problem was mostly because of a lack of awareness about the condition among medical practitioners.
So far, Algas has gone through four heart surgeries, all to help him manage the condition and live a normal life.
Centre-Alliance
Inspired by Algas’s improvement, my wife Solange and I decided to establish Centre-Alliance, in Kigali, Rwanda, to nurture children affected by rare disease. Through this work, I combine my passion for helping children with rare diseases with my professional experience—I am a consultant in the financial sector (banking and microfinance), doing technical assistance and capacity-building—to create a nurturing and inclusive environment.
The centre’s main objectives are to raise awareness concerning rare diseases in general, to help children to grow up well—teaching them basic life skills such as reading and writing—and to help them socialise and be included in society. We also engage with parents to comfort them and offer courses on rare diseases so that they can effectively take care of those affected by a rare disease.
I hope to meet, share, exchange, collaborate and partner with others to achieve better outcomes for those affected by a rare disease. To find out more about Centre-Alliance, please visitcentre-alliance.rwor emailinfo@centre-alliance.rw.
Editor’s note: This article was published to coincide with Williams Syndrome Awareness Month, which is every May. Please contact us to discuss how we can support awareness-raising for your organisation. Email:hello@rarerevolutionmagazine.com
