Patient Stories
Whether it’s caused by ENPP1 or ABCC6 Deficiency, every family’s journey with GACI and/or ARHR2 is unique. The road can be exhausting, challenging, heartbreaking, hopeful, and inspiring. Read on to discover some real life patient stories as told in their own words. If you’d like to share your story, please contact us.
Sir’Savion’s Story – United States
Sir’Savion was born 8-6-15. My pregnancy seemed fairly normal, until my 36 week ultrasound which showed fluid around my baby’s heart. I had to go see a pediatric cardiologist who decided that 2 days later I was having my son via c-section. Upon being born he was in a lot ... Read More >
Callum & Nora’s Story – United States
In 2010, our son Callum was born unexpectedly at 25 weeks gestation, weighing only 1 pound 9 ounces. He had a difficult NICU stay with several complications including chronic lung disease, extremely low blood pressure, and infection ... Read More >
Natalie’s Story – United States
Two weeks before Christmas 2012 it was time to begin the “to do” list for the busy holiday season. As I scooted up to our kitchen table with my growing pregnant tummy, I stopped a moment to answer the phone. Our obstetrician was calling to share the results of the ... Read More >
Vicki’s Story – Australia
In 2003, I gave birth via emergency C-section at 34 weeks gestation. My daughter needed resuscitation immediately. She had doctors confused as to what may be happening to her and why it was so difficult to stabilise her. At three days old, she was flown from special care to intensive ... Read More >
