Home infusion helps “Fab Five” live life to the fullest while managing rare disorder

Known as the “Fab Five,” Tami Alyas Masih and four of her children have received biweekly infusions for more than four years to manage Fabry disease – a rare genetic disorder that affects a person’s ability to break down fats.

Left untreated, Fabry disease can increase risk of heart attack, stroke, and other serious illness. Through M Health Fairview’s innovative Home Infusion program, the Alyas Masih family is able to manage their Fabry disease – without letting the disease manage them.

In some ways, the family’s journey with Fabry disease began in 2011 when Asher, the second oldest of seven children, was formally diagnosed. But the real story began long before, when family members started experiencing wide-ranging health issues, from Tami’s childhood arthritis and low-grade fevers to her children’s frustratingly similar symptoms.

“It was a relief to have a name for it, knowing that it wasn’t all in my head,” Tami said, referencing Asher’s diagnosis. Soon after, she and three of her other children were also diagnosed with the disease.

While the diagnosis provided clarity and a sense of relief, the treatment was far from easy. The five Alyas Masih family members require ongoing Fabrazyme infusions. The medication provides the body with the missing enzymes required to help break down fats. However, it’s not always an easy therapy.

When Asher had a frightening, adverse reaction to his fourth infusion, his M Health Fairview care team partnered with the Alyas Masih family to keep Asher moving ahead with treatment while safely managing its affects. Pediatric Genetics and Metabolism Physician Chet Whitley, MD, and his colleague Pharmacotherapy Specialist Jeanine Jarnes, PharmD, encouraged the family to visit M Health Fairview Masonic Children’s Hospital, where Asher got the support he needed. Once Asher’s infusion plan was back on track, the other four affected family members began infusion treatments.

The family stayed at a hotel to be near the hospital where they received infusions. Before this, they had spent over two years driving to an infusion center twice a week – an hour away from where they lived. They built a relationship with Whitley, Jarnes, and M Health Fairview Infusion Nurse Tony Mariette, RN. Because of this, the Alyas Masih family soon became comfortable with the idea of receiving their biweekly infusions at home.