Bella Santorum's Disability Is a Difficult Reality for Many

Presidential candidate Rick Santorum's 3-year-old daughter Bella had just a 10 percent chance of surviving her first year of life

When Bella Santorum was born three years ago, her parents were forced to face an impossible reality: their daughter had less than a 10 percent chance of surviving her first year of life. Bella was born with Trisomy 18, the second most common autosomal trisomy after Down’s syndrome. This genetic disorder affects the development and function of vital organs, causing complex heart defects, neurological challenges, severe digestive complications and a failure to thrive. How could any parent cope with such a reality? My closest friend lost her daughter to Trisomy 18 this past December and I witnessed the painful and immensely inspiring journey a Trisomy parent must endure.

Parents of Trisomy children are forced to make discouraging choices about medical intervention and their child’s quality of life. Since Trisomy 18 affects every child differently, and so few survive, accessing the appropriate medical advice can be a challenge and determining the right care impossible. But through the fog of these evaluations and diagnoses, these families reveal a beauty outsiders rarely expect.

You see, parents of Trisomy babies fearlessly toss aside the odds and make the very sound choice to fall in love with their babies. Regardless of adjusted tubes and hissing machines, or hospice nurses whispering in and out of their lives, these families coo and smile and celebrate their child’s extraordinary significance.

I know that we couldn’t help ourselves. My friend’s beautiful daughter caught your heart the moment she was placed in your arms. We marveled at the way she curled her fingers, latched on to a bottle and tracked her parents across the room. She was astonishing and wonderful and all her parents asked for was just a little more time to love her just that much more. It is a thing of enormous beauty to watch and appreciate.

While Bella has caught the media’s attention, she has caught mine too. Every child is a wonderful gift. But there is something about a Trisomy child that makes me stop and take a breath. These children most certainly have a very special purpose. As they beat extraordinarily slim odds and conquer yet another day, they bring their family’s world into very sharp focus. The past matters less, the future is unthinkable. It is the present that wraps itself around these families and binds them so tightly together. Right now they have their child. Today is a very good day.

My friend’s child only lived 40 days. And yet she conjured up and inspired more love in those few days than most people do in an entire lifetime. I can only imagine the gifts of love, hope and inspiration Bella brings to her family every day. So, it’s no surprise I find myself gazing at that child’s picture on the news. Three years old and there she is, smiling back at the camera, signifying the love she has been thriving on and offering each of us a promise to treasure all that we have right now.

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