When Jaclyn was 28 weeks pregnant with Lucy, an ultrasound revealed a growth in the unborn ’s abdomen that complicated her lung development. Jaclyn was admitted to Children’s Hospital of Philadelphia (CHOP) to undergo further testing. Three days later, Lucy was born in CHOP’s special delivery unit. She had a rare condition called congenital mesoblastic nephroma; a rare renal tumor.

Within the first three days of her life, the newborn underwent two surgeries to remove a tumor and one of her kidneys because it was ensconced by the tumor. Lucy spent 95 days in the NI/ICU at CHOP and went home on Thanksgiving Day of 2015.

Unfortunately, when the baby returned a few weeks later for a checkup, doctors discovered that the tumor had begun to grow back, rapidly and aggressively. This discovery forced another emergency admission to the hospital. The baby received a Broviac line in her chest and began chemotherapy treatments. She was discharged on Christmas Eve.

Lucy continued to receive chemotherapy and underwent another round of surgery in April 2016 to remove the tumor once again. This was followed by additional chemotherapy and seven doses of radiation.

“She is happy and sassy most of the time, and she’s always ready to have fun!” Jaclyn said.

“We have been following up with CHOP since then and she has been good there,” Jaclyn said. “Lucy has been receiving physical therapy [PT] and occupational therapy [OT] services since she was very young. When she was around 2 years old, on a follow-up visit, a doctor mentioned she seemed to check a lot of the boxes for cerebral palsy [CP]. We didn’t know what that entailed but she started being seen in the CP clinic at CHOP and they diagnosed her with spastic triplegic cerebral palsy.”

Lucy’s legs and one of her arms have “high-tone musculature” (stiffer muscles), which makes it difficult for her to control her movements. This condition is not uncommon in babies born as prematurely as Lucy was. Additionally, her heart stopped during one of her first surgeries which led to damage, called periventricular leukomalacia (PVL) in a part of her brain which interferes with the messages the brain sends to the muscles.

“We have been working hard on stretching and exercising her as much as possible, but it is hard for Lucy to use some of her muscles. She gets around by crawling and using a walker, but she is still working hard on walking and even sitting in certain positions. She has received Botox shots in her legs and is on a daily medication to help with her muscle stiffness, but she has to work very hard every day to get around,” Jaclyn said.

Lucy, however, is a joyful and well-adjusted despite the many challenges she faced at the start of her life and the ongoing ones she deals with on a daily basis. She’s close with her siblings and wants to do whatever they do.