Anastasia Pagan, inspirational woman who persevered despite lifelong physical challenges, has died at 22

Anastasia Pagan, 22, of Limerick, an inspirational woman who lived — and thrived — despite many lifelong physical challenges, died Monday, May 20, of complications from an infection and cardiac event at Children’s Hospital of Philadelphia.

Born with a diaphragmatic hernia, chromosome abnormality, and pulmonary hypertension, Ms. Pagan spent most of her life with her family in Montgomery County. Much of it was also spent in hospitals and rehabilitation centers.

She eventually required a ventilator, breathing and feeding tubes, and regular visits to the hospital, and the staff and other families at CHOP grew to know her and her family well. She eagerly interacted with music and art therapists during extended stays, made friends with other patients, and, even though she was nonverbal, expressed herself often through hugs and smiles and laughter.

“Anastasia was a wonderful young woman,” one of her nurses said in an online tribute, “and it was a pleasure to care for her and [her] family through the years.” Another nurse said: “Such a sweet angel. I will cherish the memories of you always.”

Despite her daily challenges, Ms. Pagan served as a loving daughter and sister, and influencer to other family members and friends. She had good days and difficult days to be sure. But she always bounced back, said her mother, Vanessa Jackson, and those around her marveled at her perseverance and positive perspective.

She especially enjoyed strumming the guitar of her musical therapist and dancing to the original “princess warrior” songs her mother composed. “Anastasia was a beautiful person on the inside and out,” said Lydia Westle, a musical therapist at CHOP.

A family friend said on Instagram: “Such a beautiful spirit and beautiful angel.” Another friend said: “Strongest lil person I know.”

Born Jan. 23, 2002, in Philadelphia, Anastasia Lucia Pagan spent many birthdays and other holidays in the hospital. But she still enjoyed celebrating like everybody else.

On Halloween, she painted pumpkins, dressed up like Batgirl and Ariel the princess, and handed out treats instead of collecting them. On Christmas, she tore open presents and posed for photos under the tree, and Santa and Mrs. Claus sat by her bedside in the hospital.

Her mother brought cakes and gifts, and decorated her hospital room on birthdays. Her siblings visited often and climbed into her hospital bed to hug and play.

“We tried to make her life as normal as possible,” Jackson said. “We wanted to be there for her and laugh with her. Her smiles were infectious, and they kept me going.”

Her mobility was limited, but Jackson and her husband, Tracy, and the rest of the family took Ms. Pagan to parks, playgrounds, and pools, the Adventure Aquarium in Camden, and on vacations to Ocean City, N.J. She liked to dress up as TV character Dottie “Doc” McStuffins, a 6-year-old girl who cares for stuffed animals and toys in her playhouse clinic, and watch the musical show Yo Gabba Gabba!

Her smile was brilliant, and her personality radiated. Her mother posted hundreds of images and videos on Instagram, called her “my stasi basi,” and said: “My sweet girl taught me what selfless love really is.”

Ms. Pagan liked to color, cuddle with her favorite dolls, walk the hospital hallways when she was able, and meet new people. She watched videos on her ever-present iPad and was sustained, her mother said, by the love and attention she received from family and friends.

“She was so loved, and we want to believe she felt it,” Jackson said. “She was strong. She was feisty. When she was happy, it showed. And her kindness showed.”

In addition to her mother and stepfather, Ms. Pagan is survived by her father, Confe Pagan, four sisters, two brothers, and other relatives.

A celebration of her life was held on May 29.

Donations in her name may be made to the Music Therapy Program at Children’s Hospital of Philadelphia, Box 781352, Philadelphia, Pa. 19178.