19 Jul Taylor’s Journey- A Family Story
Wearing pink fuzzy slippers and a face mask, 17-year-old Taylor Fentress walks from her room to the kitchen of the Ronald McDonald House in search of an afternoon snack. Her mother, Amy, sits at the front window, recalling her youngest daughter’s long journey.
Taylor was born with a heart defect called Ebstein’s anomaly, a congenital condition where the tricuspid valve in her heart did not form correctly. Almost immediately after her birth, Amy and her husband were given the grim news that Taylor was only expected to live for 3 days, given the severity of her condition. Their hearts sank in sadness—until a pediatric surgeon in their area offered to perform a then very experimental, open-heart surgery on the newborn. The couple decided that it was their only chance at saving their daughter, and gave permission.
To their joy, the surgery went well. It was then followed by two more successful surgeries before Taylor’s first birthday. Unfortunately, during recovery from the third, Taylor contracted a staph infection, resulting in most of her sternum being removed. Then, at age 2½, she had a pacemaker installed. Despite this initial adversity, Taylor continued to grow into a loving, bright child, and in 2000, her family moved from their home state of New York to the Greenville area in South Carolina. Amy laughs and says, “We like it because it’s so much warmer here!”
On Jan. 3, Taylor was put on the list for a heart transplant. In the early morning of Jan. 4, Amy received a phone call—by sure miracle, a heart was available for Taylor and doctors needed to perform surgery as soon as possible. Taylor was transferred to MUSC, where she underwent surgery and stayed during the first part of her recovery.
Her family, however, was unsure of their accommodations. That’s when one of Taylor’s nurses called the Ronald McDonald House, which just happened to have a room available.
“With it being an unexpected trip, the cost of a hotel on such short notice would have been unimaginable,” Amy says. “RMH has been a blessing there.”
After being discharged as an in-patient, Taylor joined her family at RMH, staying in one of the seven transplant-specific rooms available. Although the House is equipped with anti-microbial copper finishing’s and sanitizer dispensers at every turn, Taylor must wear a face mask and carry her own personal hand sanitizer, taking extra precaution to avoid infection. Despite this tedious routine, Taylor remains in good spirits. During her most recent and sixth stay at MUSC, Taylor kept her spirits up by joking with her older sister, Ryan, who visits when she can take time away from college in Greenville. Amy says, “Amazingly, Taylor has retained her childlike view of the world. She hasn’t grown up too fast.”
In April, Taylor will be turning 18. Because she missed so many days due to surgery and recovery, she did not graduate from high school. However, she plans to get her GED and looks forward to higher education. She originally planned to be a veterinary assistant, but that may change due to the high risk from feline and avian infection. Still, Taylor continues to pursue the things she loves the most. She enjoys cooking and petting the House Labradoddle, Cooper. She Skypes with her grandparents in Florida and hopes to visit them soon. For her upcoming birthday, Taylor’s church friends are planning a formal party—complete with ball gowns and elegance—as Taylor was unable to attend prom.
“Our faith is very important to us,” says Amy. The sunlight shines through the windows, and Amy smiles. “God has a path for Taylor.”
You Can Make a Difference
You can help children like Taylor and their families by including a planned gift in your estate plans. There are many ways to give that will work with your personal financial and charitable goals. Learn more by contacting Barbara A. Bond at 843-723-7957 Ext. 302 or Barbara@RMHCharleston.org today.