At Lady Josephine Foundation, we know from experience that PVS is a life-threatening condition, but we also believe PVS is shifting from a terminal diagnosis to a chronic disease through the work of brave families, caring doctors, and specific research.
JOSEPHINE’S JOURNEY
At 7 weeks old, Josephine was diagnosed with a congenital heart condition called pulmonary vein stenosis (PVS — a rare, progressive, and serious condition in which there is a blockage in the blood vessels that brings blood from the lungs back to the heart). Josephine’s story is an amazing triumph, journeying from little hope of survival to a thriving child. By the age of 2 and a half, she had undergone 2 open heart surgeries, 13 heart catheterizations, and had a pacemaker placed. She received up to 14 doses of medication per day, depended on a G-tube for nutrition, and participated in multiple weekly therapies during this time period.
Presently, the disease is stable, and she receives all nutrition by mouth, and minimal medications. Josephine adores time with her big sisters, exploring in nature with her family, and just being a kid. We attribute this success to the Divine Orchestration of the dedicated medical teams that have cared so well for her, and of the answered Prayers through the Love and support she has been blessed to receive from family, friends, and strangers. Josephine’s life has helped pave a path of hope and potential for children with PVS. At Lady Josephine Foundation, we know from experience that PVS is a life-threatening condition, but we also believe PVS is shifting from a terminal diagnosis to a chronic disease through the work of brave families, caring doctors, and specific research.
PVS (Pulmonary Vein Stenosis) is a serious disease, resulting from a blockage in the blood vessels responsible for blood flow from the lungs back to the heart.
Most children require frequent interventions including; surgery, stent placement, multiple medications, and heart caths throughout their childhood. Because few institutions have PVS programs, families often have to seek out these institutions on their own and travel (or relocate) great distances to receive the treatment. Below is an example of an early childhood treatment timeline for PVS.
Although often life threatening, we believe that PVS is shifting from a terminal diagnosis to a chronic disease through brave families, caring doctors, and specific research.
Our Mission
Thank you for your consideration in partnering with us and walking along side these families!
OUR GOAL
To raise $150,000 annually. All the funds we raise provide families of children with PVS the means and support to receive treatment in fighting this progressive disease. These funds also support research through various centers that are striving to better understand, develop, and implement life–saving treatments for PVS. Such as the CCRC, who is currently developing a national multi-center PVS registry.
