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Nderi: I lost my sister to Down Syndrome and resolved to create awareness about the disease.

By Teresa Nderi

An hour after they arrived to pick me up from school, as we sat in the car with my parents, heading going home, my mother broke the silence, saying, “Your sister was not able to fight the pneumonia this time.”

“She succumbed while receiving treatment in ICU at the hospital.”

I must have lost my sense of hearing for a while because I did not hear anything else of what was said to me thereafter.

My sister had been living with Down Syndrome.  This is a condition that occurs when a baby is born with extra genetic material in their chromosomes.

Genes determine who we are, what we do, how we look, basically everything that we are. Any alteration in these genes can cause drastic effects.

This condition had her immune system compromised and as a result, she was susceptible to any illnesses.

The kind of pneumonia that she suffered from kept recurring only that this time it had become so severe that even being put under oxygen did not help.

She also suffered from Hydrocephalus, a condition characterized by excess fluid build-up in fluid-containing cavities of the brain.

Her head kept enlarging by the day. This meant that the fluid would have to be drained occasionally. The doctors would have had to insert tubes called shuts that facilitate the free flow of the Cerebrospinal fluid (CSF).

As if this is not enough, she exhibited poor bone formation, digestion problems and Atrial Septal Disorder, commonly known as a hole in the heart.

After an assessment, the doctors decided that the hole had to be corrected surgically but there was a problem.

My sister was losing weight instead of gaining and the operation could not be done.  She lost her battle with the complications before the surgery could happen.

As a family, we knew so little about the condition. In 2006, the internet was not so popular.

We didn’t even own smart phones to begin with and we lived in the village so getting information from the web was a tall order.

The only source of information we had was a letter that had been sent via post by an aunt of mine. She had printed out information explaining what my sister was going through.

Sometimes society is so unforgiving to people who are born differently. We cannot blame them because they have no knowledge about these conditions or how to live with these individuals.

I decided to create a YouTube channel where I post content about these conditions with an aim of creating awareness and a large database of content related to developmental conditions in children.

In this way, the information is accessible to many people and we move many steps closer to having an informed society, a society that empathizes with its people born differently.

I put so much of this information related to Down Syndrome on my Website: tesrichard.co.ke , YouTube: Exploring Developmental Conditions with Tes , on Facebook as Tes Richard  and on my Twitter handle @Wanjuunderi92.

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