Trisomy 5q

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My Child Has Trisomy 5q. This Is What It Means to Be Rare.

My Child Has Trisomy 5q. This Is What It Means to Be Rare.

Daniella Ferreira

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8y

My Child Has Trisomy 5q. This Is What It Means to Be Rare.

February 29 is Rare Disease Day. February is also Congenital Heart Defect Awareness Month. And the month of Feeding Tube Awareness Week. My child is part of all three. • 80 percent of rare diseases are genetic in origin. • 50 percent of the people affected by rare diseases are children. • 30 percent of [...]

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Daniella Ferreira

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Uncategorized Disorders

8y

What Was Impossible to See on Diagnosis Day, I See Clearly 3 Years Later

It’s been three years since we stood in a front of the geneticist who gave us a diagnosis we never heard of: trisomy 5q. All sounded so unreal. I kept repeating that word in my head. Trisomy. It was nothing I’d imagined hearing. Then again, what exactly did I want to hear? Even today I’m unsure. What she [...]

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young girl in snow white costume

young girl in snow white costume

Rachel Kassenbrock

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8y

She Wanted Her Daughter to Have a Great Birthday. 2 Strangers Made It Amazing.

Daniella Ferreira and her daughter, Naylah, live in Austin, Texas. Naylah has trisomy 5q, a rare chromosomal disorder that has landed her in and out of the hospital throughout most of her life. She has undergone heart surgery, a feeding tube placement and numerous other medical procedures — all before she was 3 years old. Naylah’s third birthday was coming up, and [...]