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Health News of Thursday, 17 May 2018

Source: Afi Tabbicca

Feature: Waardenburg syndrome and survival of Rebecca Chogtaa Dumeh

From left: Miracle and Rebecca Chogtaa Dumeh From left: Miracle and Rebecca Chogtaa Dumeh

I am seated at my desk staring at a client ‘s brief I’m supposed to crack, deadline is past due but my mind is miles away, spiralling and churning, racing at the speed of light with a myriad of thoughts, ideas and anxieties. My heart pounds loudly in my ears, I’m excited! I’m thinking, “FINALLY! A worthy cause to pursue. I just might be of help to someone in actual need.”

But wait. I give myself cause to pause. “What if it doesn’t work? What if you can’t give the help you are so excited to give and it blows up in your face?”

“Snap out it girl!” I berate myself almost immediately. “Not today devil, NOT TODAY.”

Today, I refuse to second guess myself, rather I choose to stand for a cause and see it through. With swirling emotions, I call for support for Rebecca Chogtaa Dumeh.

Rebecca Chogtaa Dumeh is a beautiful blue-eyed 2-year-old Ghanaian girl who hails from Nandom in the upper West Region. She has the rare condition of Waardenburg Syndrome.

Rebecca’s story was brought to the lime light by a media personality Afi Antonio who happens to be a friend on Facebook. Mrs. Antonio is on a mission to help Rebecca as she seeks financial aid in her journey with Waardenburg Syndrome. She has run campaigns on social media calling for donations and made appearances on a few media platforms; a feat I applaud a million times and then some. Consequently I add my voice to her call.

Waardenburg Syndrome is a rare genetic disorder most often characterized by varying degrees of deafness, minor defects in structures arising from the neural crest, and pigmentation changes. In simple English, it is a group of genetic conditions that can cause hearing loss and changes in coloring of the hair, skin and eyes. Waardenburg Syndrome is so rare it affects only about 1 in 42,000 people worldwide! Though rare, Waardenburg Syndrome may be common in a family because it is genetic.

The most common symptoms of Waardenburg Syndrome are pale skin and pale eyes. Another common symptom is a streak of white hair near the forehead.

Thankfully Waardenburg Syndrome is not terminal, neither is it contagious. It is manageable. And although there’s no actual cure for Waardenburg Syndrome, most of the symptoms don’t require treatment.
If inner ear deafness is present, as is the case with Rebecca, hearing aids or cochlear implants can be used. As with any medical condition, seeking an evaluation and treatment for deafness as early as possible will help in a child’s language development and educational advancement.

I am a mother of two indefatigable girls and so I’m a pushover for little girls. There is just something about little girls that tugs hard at one’s heart-strings, twisting it ever so mischievously around their tiny fingers. They make my heart smile- the kind of smile that sometimes alarms people about my sanity. A cry from one of them unsettles me so deeply that I feel my soul rattled and flustered at their discomfort.

Everything within me reaches out to assuage whatever afflicts them. These are the sentiments that Rebecca evoked within me. I imagine if it were my daugters in this predicament, what I wouldn’t do to find a solution to this Waardenburg Syndrome defect, even to the point of death. She affects me that much, like she were my same as children.

The reason for this rather effusive note is to implore you to tap deep into your most altruistic sensibilities and assist Rebecca’s parents and loved ones in every way possible to raise USD $50,000 towards a cochlear implant surgery. This will correct Rebecca’s hearing defect caused by the syndrome. All that stands in the way of little Rebecca living a normal regular life is FIFTY THOUSAND AMERICAN DOLLARS and a deadline of April 2019. Time is of the essence because she has between now and her 3rd birthday in April 2019 to undergo this surgery, after which nothing can be done. And if our old adage, “It takes a village to raise a child” is a true reflection of our way of life as a people then I have no doubt that YOU will sacrifice perhaps a day’s lunch, or one bottle of your Friday beers, or one Uber-trip fare. One pesewa, one cedi, 2 cedis, 10 cedis, 50 cedis, 10,000 cedis, whatever your capacity, it is very welcome and appreciated.

Let us stand as one village and help Rebecca.

The money seems outrageously unattainable but a journey of a thousand miles begins with a step. There is another little girl, Miracle Efua Akyere who has also come out to ask for help regarding this syndrome. Every cedi counts.

To contribute towards Chogtaa’s hearing surgery, please send any amount to
GCB Bank Account number 1381220000828.

Account Name Florence Ziniel ITF Rebecca Chogtaa Dumeh - Spintex branch

Or MTN mobile money numbers

0246827858 with the name Philomena Esinam Antonio,
0246392773 with the name Francisca Ziniel and
0552527698 with name Rebecca Chogtaa Dumeh

Alternatively send to me on Airtel Money Number

0262220068 with the name Afi Dzakpasu
Or TigoCash Number
0271796845 with the name Omar Kobina

If you are outside Ghana kindly can send through the Gofundme link

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