Finding new ways for us to follow Jeffrey’s wishes asking us to “Do Something!” is central to our mission and guides our work each and every day. Because of Jeffrey, we were able to establish the “Roots & Wings” program to provide travel (the “Wings) and related support (the “Roots”) to families whose child has been identified with a potentially life-threatening Primary Immunodeficiency that requires lifesaving medical care far away from home.
These patients often require transportation to specialized centers where they might reside while undergoing treatment. Families often stay in a Ronald McDonald House for many months, and they may not have the funds to do so. We would like to make life easier, reduced their burden, and enable as many children as possible to have a second chance at life.
Over 60 “Roots & Wings” grants have been awarded to support travel and housing for families of children identified at birth with life-threatening diseases. We’re able to help babies from all over the world, from Paraguay to the Philippines, Navajo Nation to New Mexico, Rome, and so many more…
I’m proud and thrilled to share the story of one of our “Roots & Wings” babies, Arturo Garcia, who is currently undergoing care at the Ronald Reagan UCLA Medical Center led by the extraordinary Dr. Donald Kohn.
In January 2020, Arturo was diagnosed with a congenital disease called Chronic Granulomatous (CGD) after months of heartbreaking uncertainty and time spent in and out of hospitals. After learning about his diagnosis, Arturo’s parents realized that the type of specialized medical care he’d need wasn’t available near their home, so they made the difficult decision to leave Venezuela.
Desperate for answers and guidance about how to save their baby, Arturo’s parents found the contact information for a Venezuelan immunologist on our website. Within two days, I was in contact with his parents, and we started forming a plan to carry out Arturo’s medical care in the United States.
Thankfully, Dr. Jennifer Leiding, a pediatric immunologist and expert in CGD, quickly answered our call for help and began arranging Arturo’s transfer from Venezuela to Miami, Florida. Even more remarkably, Arturo’s entire family would be able to travel with him and remain in Florida during his care. On February 3, 2020, just weeks after Arturo’s initial diagnosis, the baby and his entire family traveled to the United States.
Today, thanks to the amazing medical care and dedication of our Jeffrey Modell Centers Network, Arturo is in good health and continuing his treatment with Dr. Kohn at UCLA. We are grateful and thankful for the opportunity to support Arturo’s family and wish him continued health and a bright future. Our efforts to save the babies like Arturo are motivated by love, earnest devotion, and motivation to fulfill our mission, always inspired by Jeffrey.