Minnesota Corporations Help Patients Access UMN's Top-Tier Care Providers: Reid's Story
Audra Underwood vividly remembers the family’s 2014 road trip from Atlanta to Nashville. It was her son Reid’s—who was only 8 weeks old—first trip ever. But this wasn’t just an average family vacation. The Underwood family was traveling to Tennessee to meet University of Minnesota Pediatric Blood and Marrow Transplant physician and researcher, Jakub Tolar, MD, PhD, who was there for a conference.
Reid was born with recessive dystrophic epidermolysis bullosa (RDEB), a life-threatening, inherited disease caused by the lack of a collagen protein that holds the layers of the skin together. Without this protein, the slightest friction can cause the skin to slide apart, resulting in painful blisters and open wounds throughout the body.
The University of Minnesota was the first place in the world to offer bone marrow transplant (BMT) as a therapy for the most severe types of RDEB and junctional epidermolysis bullosa. The transplant uses cells from a healthy donor to help produce the missing protein and ease the condition.
“Dr. Tolar’s name kept popping up during our research, and we knew we had to meet him,” said Audra.
On December 2, 2014, 6-month-old Reid underwent a bone marrow transplant at University of Minnesota Masonic Children’s Hospital with his 5-year-old sister as his donor. He continues to be seen by Dr. Tolar several times a year.
Tolar says that “EB patients and their families are extraordinary. Reid is a cheerful, funny, loving little boy despite the fact that he lives in constant pain. His parents have the additional role of medical caregivers that takes phenomenal energy and commitment. Just taking care of Reid’s skin takes hours each day.”
Reid is now 4, and the trips back to the Minneapolis hospital are a little longer than that first road trip from Georgia to Nashville. Fortunately, the family’s most recent journey between Minneapolis and home was made easier thanks to the Corporate Angel Network (CAN) and Medtronic. Reid and his family flew home via corporate jet.
Started in 1981, Corporate Angel Network has flown more than 57,000 patient flights to date and has grown into a network that includes all the major centers in the United States. There are 500 U.S. corporations who support the mission, Medtronic among them. Hundreds of flights a month are provided for patients and caregivers who need to travel for lifesaving care.
“We are grateful that there are corporations in Minnesota that participate in our program so that we can get patients to the University of Minnesota Masonic Children’s Hospital and the other fine medical treatment facilities in the Minnesota Health System,” says Gina A. Russo, CAN’s Executive Director.
The Underwood family is committed to paying it forward. They started “Crawling for Reid, Inc.” a 501c3 that raises money through University of Minnesota Foundation to fund Dr. Tolar’s EB research. As of mid-October, Crawling for Reid had given more than $47,000.
“Reid and other kids with EB are living an unimaginable life. No one can comprehend the pain they endure every day of their lives,” said Brian. “We are grateful to have met Dr. Tolar and will do anything to help to further his research. He knows this disease better than anyone and the faster he can get funds to start trials, the faster Reid gets better, so it is our mission to help as much as we can.”
If you would like to learn more about the Underwood family’s efforts to raise money for BMT and EB research visit the Crawling for Reid Facebook page.