With the expansion of prenatal genetic testing, must come the expansion of dialogue as it relates to the ethical ramifications of prenatal diagnosis. I am not a medical professional, nor a genetic specialist. I am the parent of a child with Osteogenesis Imperfecta (OI), a rare genetic condition. I am a woman and patient… Continue reading Why it is inappropriate, unethical and negligent to diagnose a baby in utero with a lethal form of Osteogenesis Imperfecta (OI)
Tag: genetic disease
A Summer to Celebrate
"You never change things by fighting the existing reality. To change something, build a new model that makes the existing model obsolete." ~ Buckminister Fuller, inventor and visionary. We are asked to step into a new and exciting time. What a beautiful opportunity it is to be on earth now. What powerful beings we are… Continue reading A Summer to Celebrate
The Day I Heard God’s Voice
At 7 months pregnant, with a baby boy whose life doctors would not predict, I heard God's voice loud and clear.
Niko and the Nuk brush
I never knew what a Nuk brush was until I learned it from Niko. Our occupational therapist introduced it to us when we started building Niko's tongue muscles. We started with stroking motions of the sides of his mouth and now he chews it independently. Since Niko was born with a broken arm, his left… Continue reading Niko and the Nuk brush
Niko’s 2nd month and his 1st Pamidronate Infusion!
In Niko's first 2 months of life, he had his first surgery and his first Pamidronate infusion! This is a treatment for Osteogenesis Imperfecta, and Niko will get it for as long as he is growing.
