Lilly's Client Story
Inspiration, Will and Drive
Easter Seals RI Outpatient Client Story
Take one look at Lilly May Pearce and she just draws you in. It could be her happy smile, her bubbly laugh or those squeezable pink cheeks. Or, it could be the fact that when you look at her, you know you are looking at a miracle.
Just minutes after Lilly was born she suffered from the effects of a very rare Fetal Maternal Hemorrhage—loss of blood led to lack of oxygen and put her into a coma. Her liver and kidneys shut down and the doctors could find no sign of brain activity. Her parents Renee and Dan were told she had "no future" and should "discuss taking her off life support." It was an agonizing decision. After removing the life support, Lilly was expected to live anywhere from two minutes to two hours. Thirty-six hours later, Lilly was holding her own but her body temperature had dropped so low it didn't even register on a thermometer—Lilly was dying. The next day, friends and family came to say goodbye while Renee and Dan tearfully planned their baby girl's funeral.
Then Renee made a decision that saved her daughter's life. "Everyone had held her the day before and I wanted to give her a bath," she recalls. Surrounded by loved ones, Renee put Lilly in the warm tub, within 30 seconds, her eyes opened wide and her cheeks pinked up. One week later, Lilly went home.
"I do honestly think God was going to take her and then realized she was supposed to be with us and decided to give her back," says Renee.
Shortly after returning home,Easter Seals Rhode Island Early Intervention professionals made their first visits to the Pearce home to work with Lilly on the multiple physical issues that resulted from the lack of oxygen. Her vision has also been severely impacted—she is legally blind.
"We learned day by day what life would entail, but she never made me nervous," Renee remembers. With support from Easter Seals therapists and a strong network of friends and family, Lilly got stronger and stronger. She began controlling her head, kicking her legs and smiling.
"Lilly is really the perfect example of how Early Intervention can make an enormous difference," says Pat Dutson, the Easter Seals physical therapist working with her. "You can tap into a child's potential; there is an opportunity to rewire. Lilly isn't the only one benefiting…any time spent with her—you get something out of it."
Lilly's progress has been incredible and there is no end in sight. She was fitted with glasses which are helping enormously with her vision. Her therapists continued to see weekly progress. Lilly started rolling, reaching out, tracking with her eyes, drinking out of a cup, eating toddler food and sitting with assistance.
She loves music, funny sounds, her big brother Tyler, Spaghettios and being with her active family.
At three years old, Lilly aged out of Early Intervention and continued her therapies at a local school. However, these therapies did not include aquatic therapy, which Lilly benefited from greatly.
In 2011, when Easter Seals Rhode Island opened the Pediatric Outpatient Program—family-centered outpatient program that provides physical and occupational therapy services for children and young adults, through age 21, Lilly was one of the first clients to join the program participating in outpatient aquatic therapy. She attends physical therapy at Easter Seals Rhode Island once a week along with her local school therapies.
Over the past two and-a-half years, Lilly, once again has proven to be victorious. Through her therapy programs she can now sit for a few minutes at a time, as well as say "hi" and "bye."
As a first grade student she can maneuver through her school using her gait trainer. Tyler loves when he sees her "walk" down the hallways in her gait trainer. He takes pride knowing that she is his little sister!
"Without the support we've received from Easter Seals, I wouldn't have known where to begin," says Renee. "She would not be where she is today without Early Intervention Services and the Pediatric Outpatient Program. It has made such an impact on her life. She is making progress and moving forward all the time."
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