“After telling them all my symptoms, they put me on hold. When they picked back up, their voice seemed urgent. ‘Go to University Health Services as soon as they open in the morning. Don’t wait for an appointment. Don’t eat or drink anything for the rest of the night.”
“We had no family history of it. When we got the news, I was thinking we had some quack doctor in the middle of the desert trying to diagnose my son by smelling his breath. He added, ‘If you waited 3 hours, he would’ve died in the car.’ My heart broke into a million pieces.”
“I remember saying to him that something must be brewing for us because our life had been too easy! The rest was a blur of grief and anger. I have a lifelong disease—one that will never be cured. One that was caused by IVF.”
“When I got to the babysitter’s, she carried her to my car; my daughter was completely knocked out. In an offhanded way I asked if she was breathing, joking. Until I put my hand on her little chest and felt no movement.”
“He was rationing the little bit of insulin he had left to last until pay day.”
“The key is to focus on the good. Remember, we are more than a number on a meter.”
With having a moderate case of progeria and knowing I aged faster, I was terrified I would never find someone to love me for who I was.