After 11 Years of Trying, Our Daughter Was Finally Born—Then We Learned She Had Hutchinson-Gilford Progeria Syndrome. My Husband Said He Couldn’t Raise a Child We Might Lose So Young… and I Made the Decision I Still Can’t Forgive Myself For

We took Sophie home.

I wish I could say that after that day everything became easy, but it didn’t.

Progeria did not disappear because we loved her.

Genetic Disorders

There were specialists, medications, physical therapy, frightening appointments and nights when Daniel and I lay awake listening to Sophie breathe because neither of us wanted to admit how scared we were.

As she grew older, her body changed faster than other  children’s bodies did, and eventually she began noticing that people looked at her differently.

When Sophie was seven, she came home from school unusually quiet.

I asked what was wrong, and after a long silence she told me that a boy had asked why she looked like “a little old lady.”

I went into the bathroom later and cried where she couldn’t see me.

Daniel handled it differently.

He sat beside her on the couch and showed her one of his own childhood photographs.

Child Care

“You know what I see when I look at you?” he asked.