When Lorelei McIntyre-Brewer picks up a pen, her words—and her imagination—take her to places her heart never could.
“When I write, it’s just me and my adventures, and nothing can stop me,” said the 13-year-old Duncannon girl, who has already won three local writing competitions.
In reality, she knows hypoplastic left heart syndrome, a congenital heart defect, does stop her without warning. The three lifesaving open-heart surgeries she had by age 3 and 30 other procedures and hospital stays have a way of doing that, she admitted.
“I don’t want people to see me just from one angle. I want them to see the real me, not just the girl with half a heart,” she said. “To me, my life is normal. People think it’s sad, but I have the best doctors and nurses in the world.”
Some of them are located right here, at Penn State Children’s Hospital, where Lorelei has been coming since she was born with the left side of her heart severely underdeveloped. Her rare heart condition was discovered at 21 weeks, after her twin brother, Rory, died in utero.
Lorelei’s future is far from certain, a fact that her mom says they don’t talk about much but is obvious from other children she knew who are no longer here.
How does a mother cope with that possibility? “I don’t think you can really focus on it,” said Lorelei’s mother, Chelle McIntyre-Brewer. “I have my moments when I collapse, but I try to do it when I’m in the shower and no one can see.”
Lorelei’s routine is unpredictable because a medical need could upend any plans, but she prefers to spend her days playing with her 5-year-old brother, Killian, or her cat, Calico, or her service dog, Mandu, a black lab that has the uncanny ability to sense when heart issues arise.
Adversity is no stranger to their family, Chelle says. Her husband Steve, who is in active duty in the Army, has had cancer three times. Lorelei’s uncles have lost limbs to the war in Afghanistan.
As if their own struggles aren’t enough of a challenge, the family advocates for other children with special needs—many of them orphans in foreign countries who need heart surgery—and for military families facing medical challenges.
Read more about Lorelei and her family in this Penn State Medicine article.