February 23rd, 2026
Care That Never Let Go
Our family first experienced the devastation of perinatal severe hypophosphatasia when we lost our firstborn. At the time, anatomy scans suggested skeletal differences, but the exact diagnosis was unclear and thought to be dwarfism. We chose not to pursue amniocentesis because it would not have changed how we loved or carried that pregnancy. Only later did we learn it was a rare genetic condition. I began researching and discovered that enzyme replacement therapy existed.
Then Gianna entered our lives, bringing joy and healing we did not know was still possible. For years she prayed for a sibling. Years later, when we learned we were expecting again, joy and fear lived side by side. Especially after ultrasounds showed similarities to our firstborn conditions. Gianna prayed for her baby brother every day. She believed he would be okay even when we struggled to imagine the future ourselves.
“He entered the world incredibly fragile. He required a special mattress to protect his delicate bones and spent two months on a ventilator...”
During the pregnancy, we were guided by the Soft Bones community and our doctor, who developed a comprehensive delivery and postnatal plan and coordinating closely with multiple teams so enzyme replacement therapy could begin immediately. Her calm confidence gave us peace when fear threatened to take over.
Because of that preparation, Francis began therapy on the day he was born.
He entered the world incredibly fragile. He required a special mattress to protect his delicate bones and spent two months on a ventilator, three months in the NICU, supported by high doses of palliative therapies for comfort and safety. At the beginning, his X-rays were devastating—his thorax and skull appeared faint, with minimal bone opacity. But his therapy began doing something extraordinary. We watched his bones develop differently. Serial imaging showed real change: increasing density, stronger structure, and visible progress in areas that once looked almost transparent. Slowly, the medication began to change everything—his X-rays improved, his bones strengthened, and one day we were finally able to hold him fully in our arms. Tubes and all, he felt like hope.
When we prepared to bring him home, the greatest fear we faced was not in the hospital room—it was the possibility that access to his medication would stop.
“When we prepared to bring him home, the greatest fear we faced was not in the hospital room—it was the possibility that access to his medication would stop.”
PANTHERx did more than deliver medication. They protected continuity of care. They stood between our family and a system that can overwhelm rare-disease patients. They helped make sure our son could keep moving forward.
Because Francis had received enzyme therapy shortly after birth, his alkaline phosphatase levels complicated coverage review, leading to delays despite his clear diagnosis. The thought of going home without secured treatment was overwhelming.
That is when PANTHERx Rare Pharmacy stepped in.
Their team worked relentlessly—coordinating paperwork, appealing decisions, staying on the phone with hospital clinicians and the manufacturer, and refusing to let our son fall through the cracks. During the most frightening transition of our lives, PANTHERx gave us stability.
PANTHERx also supported us far beyond approvals. They helped coordinate medication delivery to our home, guided us through storage requirements, responded quickly when we had refrigerator concerns, and patiently answered every small question we had—no matter how minor it seemed. Every customer service representative we spoke with was kind, knowledgeable, and reassuring. In moments when we felt overwhelmed, your team consistently made us feel supported and never rushed.
Today, Francis is thriving
He now has a G-tube, attends every appointment, and works hard in physical, occupational, and feeding therapy. He is stronger, more alert, and full of personality. Gianna remains his biggest cheerleader—still praying for him each night.
PANTHERx did more than deliver medication. They protected continuity of care. They stood between our family and a system that can overwhelm rare-disease patients. They helped make sure our son could keep moving forward.
Thank you for standing with Francis when it mattered most.
With our deepest gratitude,
Liviera & Albert
Gianna & Francis
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