Going Above and Beyond For Mom, Daughter With Rare Disease
By Fairview Health Services
Fairview Home Infusion recently celebrated an important milestone: reaching a patient census of 1,000 IV patients! This achievement was made even more special by the exceptional work the Fairview Pharmacy Services team did to make the patient—or rather, the patients—feel comfortable and cared for.
Meet Nancy and Rachel
Nancy Larkey and her 11-year-old daughter Rachel have many things in common—their brunette locks, their quiet nature and their love of movies, to name a few. The two also share Fabry disease, a rare genetic disorder caused by a defective gene.
“I tested Rachel when she was two months old,” says Nancy. “I was really hoping she wouldn’t have it.”
For Nancy, the disease manifests in a burning sensation in her hands and feet, decreased ability to sweat and muscle pain. Rachel hasn’t had many symptoms yet, other than an occasional migraine.
Even so, Nancy wanted Rachel to start treatment for the disease early in hopes that it would keep the symptoms at bay and lead to a longer lifespan. As she started seeking treatment for her daughter, Nancy decided that it was the right time to start her own treatment as well.
In it Together
In searching for the right place to receive treatment, Nancy found her way to Fairview Home Infusion, part of Fairview Pharmacy Services, where she had a special request: she wanted to be able to receive her treatment together with Rachel.
Whereas many infusion centers offer only pediatric or adult infusions, Fairview Home Infusion serves people of all ages and was able to make a few special arrangements so that Rachel and Nancy could get their first treatments side by side.
“I knew Rachel wouldn’t be comfortable by herself because she doesn’t like needles,” says Nancy. “This way she could see what they were doing to me first and know it was OK.”
Home Sweet Home
After being monitored on-site during their first treatment, Nancy and Rachel have been able to start receiving infusions from Fairview in their own home.
Not having to travel for treatment gives the family more time for the things they love to do together, like playing cards and having family dinners at their grandparents’ house.
“Fairview was helpful and nice,” says Nancy. “I’m happy about it.”