Rewritten version with similar meaning:

Born weighing only 1 pound 12 ounces with Cornelia de Lange syndrome, this little girl has never let her diagnosis define her.

If her mother could go back in time, she would return to the moment doctors carried her tiny newborn away — not to change the past, but simply to tell herself: “She’s going to be okay.”

Arriving at just 32 weeks and far smaller than expected, the baby faced hearing difficulties, differences in her arms and hands, and a later diagnosis of the rare genetic condition Cornelia de Lange syndrome.

Those first hours were terrifying. Yet even then, quiet signs of her strength appeared. Though her cry was almost too soft to hear, she was breathing on her own. She looked at her parents. She nestled into their arms.

Those small moments became the earliest victories in a long, demanding journey for the whole family.

Feeding proved especially hard. At nine months old and still weighing only about five pounds, she needed surgery for a G-tube so she could receive proper nutrition. The family also learned to manage her hearing challenges; hearing aids gradually opened more of the world to her. A prosthetic arm later gave her greater independence.

Her parents began celebrating milestones most families might overlook — lifting her head during tummy time, sitting up on her own, making new sounds, reaching for the next tiny achievement.

By 18 months she still weighed just nine pounds, yet she was sitting independently, trying to stand, taking assisted steps, and babbling nonstop. Hearing improved in one ear, and her bright personality shone more every day.

Her mother says the experience taught them that a diagnosis can name a medical condition, but it cannot dictate a whole life.

“She is so much more than a diagnosis,” the family shared. “She is our daughter, our joy, and the little person who has completely changed our world.”

They have also faced reactions from strangers. Some people are kind and simply say how adorable she is. Others ask insensitive questions about her appearance. The phrase that hurts her mother most is “I’m sorry.”

“She is happy, she is growing, and she loves life,” her mother explained. “We don’t look at her and see something to feel sorry about. We look at her and see our child.”

People may notice that she looks different. What the family hopes others will understand is that being different does not mean being less.

“She deserves to be seen as a little girl first,” her mother said. “Get to know her before deciding what her life will be like.”

That may be the greatest lesson their daughter has taught them.

She was born extremely early and extremely small. She faced a rare syndrome, hearing challenges, differences in her arms, feeding struggles, and many uncertain days.

None of those things stopped her from becoming exactly who she is.

Her mother once wished she could return to that frightened version of herself on the day of the birth and say:

“It won’t always be easy. But that tiny girl is going to become your whole world — and every little victory will be worth celebrating.”

Source: https://emedicine.medscape.com/article/942792-print