Aafiya’s Fight with Edward’s Syndrome & VDS

Hi everyone

Writing this is one of the hardest things I’ve ever had to do.

I am a single mom to five beautiful daughters. My youngest daughter, Aafiya, was born on 28 January, and we did not know about her condition until she was born. She has been diagnosed with Edward’s Syndrome (Trisomy 18) a rare genetic condition that affects about 1 in every 5,000 births worldwide. This condition can cause serious heart, lung, and developmental challenges. Because of her Edward’s Syndrome, Aafiya has also developed Ventricular Developmental Syndrome (VDS), which requires even more monitoring and specialized care.

While her arrival has been a blessing, these early weeks have also been filled with worry, exhaustion, and nonstop care.

Our nights have been especially hard.

Most evenings, after settling her four older sisters into bed, I stay awake through the night feeding Aafiya slowly, watching her breathing, burping her carefully, and listening to every small sound she makes. Some nights I barely sleep just short moments of rest between feeds. I often find myself...