MANZI Short Bio

The story of MANZI

Every parent’s wish is to have a healthy child. Sadly, for us, this wasn’t the case.
Eighteen years ago, eight months after giving birth to our first child, we realized that he had a medical condition that would later hinder his wellbeing.
We found out that our son has a disease known as “William syndrome (WS)”, a rare neurodevelopment genetic disorder that features mild learning or developmental challenges, high levels of calcium in the blood and urine, and a markedly outgoing personality.
The delay in detecting the problem was mostly because of unawareness about the condition, not just with them as parents but also the medical practitioners.
At the moment, our son, MANZI has so far gone through four heart surgeries, all to help him manage the condition and live a normal life.
Inspired by our child’s improvement, we decided to establish “Centre-Alliance” in Kigali to take care of children with similar conditions, the center’s main objectives to raise awareness concerning rare diseases in general.
We founded the “Centre-Alliance” to help children with basic life skills including how to read and write. The center will among other things, help children to socialize and the get familiar with society. We also engage with parents to comfort them and offer course packages on rare diseases so that they can well take care of their affected children.
I, MANZI, a father of a boy 18 WS called MANZI and other 2 children (1girl & 1boy). Professionally, I am a consultant in finance sector (banks and microfinance) doing technical assistance (TA) and capacity building (training, coaching, Business Plan, Policies and procedures manuals, tools, studies …)
I am one the founder and the Managing Director of “Centre-Alliance”, a center to nurture children affected by rare disease.
I am glad and I have honor to share with you this bio for my participation in Rare Disease Awareness. I hope to meet, share, exchange, collaborate and partner with other for the best of ours affected by a Rare Disease.

Thanks & All the best,