On November 13, 2013, Susan gave birth to her second daughter, Phoebe. She was a beautiful baby with wispy brown hair and deep, sparkling eyes. Friends and family adored her, especially her big sister, 3-year-old Hannah.
Phoebe was born with a rare chromosomal abnormality which caused life-threatening complications, including congenital heart defects and a lung condition called pulmonary interstitial glycogenosis. Though doctors successfully repaired two holes in Phoebe’s heart, the steroids they gave her to help her lungs suppressed her immune system, leaving her susceptible to serious infections.
Phoebe was in and out of the hospital, sometimes for months at a time. After her heart was repaired, she was days away from getting off the ventilator when her condition worsened. She contracted pneumonia and sepsis, overwhelming her little body’s defenses. She passed away on September 3, 2014, at 9 months of age.
In this year’s El Tour de Tucson, Susan and Jessica will ride 50 miles – 50 for Phoebe – to honor the beloved baby’s memory. They are also riding to raise funds for Beads of Courage, a Tucson-based nonprofit organization that supported the Regan family throughout Phoebe’s life.
During each hospital stay, nurses and child life specialists provided colorful beads to Phoebe’s family, following the Beads of Courage program guide for her medical condition. The beads commemorated every step of her treatment journey: a black bead every time she was poked with a needle, a red bead every time she received a blood transfusion, a pink bead every time her life was dependent on a ventilator, and many more.
Phoebe’s beads – which the family now displays in a beautiful glass vase in their children’s reading corner– serve as a long-lasting, tangible symbol of her courage throughout her fight for life. Big sister Hannah also received beads through the Beads of Courage Sibling Program.
"Every time they came in to give us Beads of Courage, they were always so kind," recalls Susan. "It brought smiles to everyone in the room."
After Phoebe passed, Susan and Jessica became more involved with the Beads of Courage organization as a way of giving back. The 2019 El Tour de Tucson will be their third time riding for Team Beads of Courage. Again this year, friends and family – including Phoebe’s daddy Keith and sisters Hannah and Bridget – will line the streets, holding signs and cheering them on. Afterwards, they will gather at a local restaurant to celebrate Phoebe’s life and honor her legacy of courage.
"It’s so hard to lose a child," says Susan. "You wonder how you are going to move forward. Supporting Beads of Courage and the families going through what we did is a blessing. Riding in El Tour helps us keep Phoebe’s memory alive."