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: OI can
Orange Socks: Inspiring Life Despite a Diagnosis
Last weekend, our family was interviewed by the President of Orange Socks, and we couldn't be more grateful for the opportunity to share our story. March 1, 2017, we went in for a routine ultrasound appointment, the 20 week anatomy scan. After 45 minutes of checking measurements, the ultrasound technician said, "I need to call… Continue reading Orange Socks: Inspiring Life Despite a Diagnosis
Niko grows strong
{New blog} Niko grows strong and continues to show us physical strength and a joyful spirit that is unbreakable!
Brave and strong: Niko grows, 3 months and another Pamidronate infusion
Niko's 3rd and 4th months are filled with his first Hallowed, his second Pamidronate treatment and his first Thanksgiving! Although in a whirlwind of moving, kids, holidays, and all things OI, I start to welcome normalcy... our "new" normal.