How Manzi got inspired into establishing a ‘rare disease’ management center

On 2 March 2021 at 09:54

Ndamukunze Manzi’s family have a child who caught a chronic disease and taken for special treatment in India in 2004.

Upon arrival in India, the child was diagnosed with ‘rare disease’ known as ‘William syndrome’ and underwent heart surgery two times for improved health conditions.

‘Rare diseases’ are characterized by a wide diversity of symptoms and signs that vary not only from disease to disease but also from patient to patient suffering from the same disease.

Williams syndrome is believed to be a developmental disorder that affects many parts of the body. This condition is characterized by mild to moderate intellectual disability or learning problems, unique personality characteristics, distinctive facial features, and heart and blood vessel (cardiovascular) problems.

The child grew with such health conditions and taken to school but the disease prevented him from being concentrated on studies like colleagues appropriately.

Parents sought an alternative, and looked for a private tutor taking care of him alone.

The alternative yielded big that the child’s intellectual capacity developed and became literate. Today, he is attending vocational trainings like computer science, repairing damaged apparatuses and doing artistic works among others.

Parents were delighted with their child’s progress that the father decided to help children with similar conditions to educate them with special attention on areas suiting their capability.

There are various types of rare diseases including ‘William syndrome’, ‘Achalasia’, ‘Trisomy 21’ and ‘Autism’ among others.

Figures from World Health Organization (WHO) show that 300 million people suffer from such diseases worldwide.

Due to the low prevalence of each disease, medical expertise is rare, knowledge is scarce, care offerings inadequate and research limited. This exposes patients to limited healthcare access and proper education.

Health experts show that people with such conditions need special attention to unleash their potential but such facilities taking care of them are rare in many countries including Rwanda.

It is under this context that Manzi and his wife Uwimbabazi decided to impact the society after realizing that their child was improving.

Speaking to IGIHE, Manzi has said that the disease couldn’t allow her child to study advance courses with others and decided to provide special education.

“Our child caught the disease at early age and failed to concentrate on studies like colleagues. The time came when colleagues went to study in secondary schools but the child stayed at home. He would join others in class but couldn’t stay focused with the disease. I later contacted a private teacher for tutoring. The child is currently literate and has acquired basic skills,” she said.

Inspired by her child’s improvement, Manzi established ‘Centre Alliance’ to take care of children with similar conditions.

“I have founded the center to acquaint children with basic life skills including how to read and write. The center will, among other things, help children to socialize and get familiar with the society. We will also engage with parents to comfort them and offer course packages on rare diseases helping parents to take care of children,” she revealed.

Manzi requested parents rush to register their children to the center to get assistance.

“Some parents stigmatize children with such conditions and isolate them yet they are able to achieve great things if they potential is unleashed,” she said.

Rwanda joined the world to celebrate Rare Diseases Day on 28th February 2021. In Rwanda, it was celebrated under the theme ‘I can’t make it alone, but we can achieve great things together’.

Centre Alliance is located in Kiyovu nearby La Gardienne.
Centre Alliance has ample premises facilitating children's leisure.
Centre Alliance is well prepared to assist children with rare diseases.
Children will be acquainted with different skills.