Born with Trisomy 18 (Edwards Syndrome), our sweet “Bon Bon” entered the world with a set of challenges that many believed she would not overcome. Lebone was born with three holes in her heart , a VSD, ASD, and PDA. At birth, we were told she was not a candidate for heart surgery. The justification? Her diagnosis. Her prognosis. The risks. 

 

God's grace prevailed…her heart lesions began to heal. Today, she is a thriving, giggling, bright-eyed 13 month old who defies every odd that was spoken over her life. Her presence is a miracle. Her laughter is resistance. Her life is proof of what can happen when we choose care over convenience, love over fear and possibility over prognosis.

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Through this journey, I’ve come to realise that the high mortality rate among children with Trisomy 18 is not simply the result of the genetic condition itself, it is compounded by the systematic denial of life-saving interventions. These are not just medical decisions; they are reflections of how we value certain lives over others.

 

Raising Lebone has opened my eyes to many gaps (in access, in empathy, in policy and in how we define worth). I have seen how much families like ours have to fight, not just for survival, but for dignity. And it is from this place, of both pain and purpose, that a deep desire was born in me: to help create a world where children like Lebone are not an exception, but embraced as part of the whole.

 

This is the reason I have committed myself to making a lasting difference,  for Lebone and for every child whose life is quietly asking the world to see their value. Our children are not broken. They are beautifully complex and they deserve a fighting chance. Not just to survive, but to be celebrated.

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Phetola Makhetha 

Founder