Hearts of Gold: The Story of Lorelei and Mandu
by Janis Gioia
Lorelei has a heart of gold.
A big heart, full of love and compassion for others and a desire to serve.
The 14 year old from Duncannon Pennsylvania has an extraordinary record of volunteer service, amazing for anyone, let alone a teen with a life-threatening illness.
Born without a left ventricle, and essentially having half a heart (hypoplastic left heart syndrome) Lorelei had three lifesaving cardiac surgeries by the age of three. After a particularly difficult surgery, when she was five, Lorelei received a compression pillow to help with post-operative pain. The adult-sized pillow offered Lorelei little relief, but it did give her an idea, one that would change the lives of child cardiac patients around the world. With the goal of easing the pain she knew all too well, Lorelei learned to sew child-sized pillows to ease the pain of the youngest heart patients. With a needle and thread and a lot of love, Heart Hugs was born.
Founded in 2011, the non-profit has distributed over 43,000 Heart Hug pillows to pediatric cardiac patients in the United States and across the globe to South Africa, China and Ireland. In addition to her charity, Lorelei has worked to raise money to support
cardiac care for children, advocates for the screening of Native American children for heart defects and helps train goats that wounded veterans use to assist them hiking. Lorelei has a resume of service that outshines that of most of her peers,
and even adults, without disabilities. She has been honored by the Dr. Oz Show as an Everyday Health Hero, received a Kohl’s Cares scholarship for Heart Hugs, and was Operation Homefront’s 2016 Child of the Year for the Army.
But even superheroes like Lorelei get tired.
“Lorelei is missing half a heart. That means she has half of the energy and half of the stamina of a typical child. It impacts everything in her life and she gets sick very easily,” says her mom, Chelle. When Lorelei needs support her black medical alert dog Mandu is always by her side. He, too, has a heart of gold. “I knew Lorelei needed a service dog and there are so many
organizations out there. I contacted Canines for Disabled Kids. They have relationships with lots of great service dog organizations, like Susquehanna Service Dogs.”
With the help of Canines for Disabled Kids and Susquehanna Service Dogs, Lorelei and Mandu were matched two years ago.
Trained as a medical alert dog, Mandu performs tasks for Lorelei like applying light and deep pressure therapy when she can’t tolerate anesthesia for medical procedures, opening doors for her when she is in her wheelchair, bumping her to interrupt her when she is having ticks and summoning help when Lorelei isn’t feeling well. It is the task that Mandu hasn’t been trained for, to detect when Lorelei’s heart is going to stop, that has made his presence in her life truly miraculous.
Chelle says Mandu has saved her daughter’s life several times. The first was when Mandu was new to their family and Chelle was
taking Lorelei to the hospital. Chelle was shocked when Mandu jumped on her as she maneuvered her van on the Pennsylvania turnpike. “I was so annoyed,” Chelle laughs, looking back. “Who expects a trained service dog to act like this when you are driving?” After pulling over and calling her liaison at Susquehanna Service Dogs, Chelle was advised to check Lorelei. Chelle found her unresponsive; Lorelei had gone into a heart block, which was a serious medical emergency. Mandu’s actions got Lorelei
the help she desperately needed. While he wasn’t trained for this either, Mandu alerted the family and
the doctors at the hospital when Lorelei’s body rejected a pacemaker. “My daughter is alive today. He’s saved her twice. That is his ultimate testament to us,” Chelle says.
There are many requirements for a medical service dog for a teen with complex medical issues like Lorelei. According to Chelle, “Mandu needs to be perform his tasks, be flexible in high stress situations and also be very mellow.” Fortunately, Mandu checks every box; he calms Lorelei in the ICU after surgery, assists her with daily living tasks and makes her daily life as
normal as possible. At home the black lab with the soulful eyes watches over Lorelei as she gains confidence and independence. His presence makes it easier for her to navigate the transition into her teenage years. With Mandu by her side, Lorelei can spend periods of time at home alone, knowing that if there is a need, Mandu can get help. “Mandu is an extra set of eyes, and he gives Lorelei the opportunity to do things other kids are doing, which is so important for children and teens with disabilities,” Chelle explains. An avid writer and also an artist that loves to draw, paint and make jewelry, Lorelei has big plans. When asked about her future plans Lorelei says, “I’d like to be a writer someday, hopefully a novelist, and I really want to help others in any
way I can.” Lorelei is already making a difference in the lives of so many children, around the world, touching them with her full heart. It seems the only part that’s missing, really, is the piece she gave to her best friend and life-saver, Mandu.
~ Janis Gioia is a special education teacher who writes for organizations
supporting children and adults with disabilities and mental health
challenges. Jan shares articles and resources to help children with
anxiety, depression and autism spectrum disorders on her website
Check out this awesome video of Lorelei produced by Penn State Childrens Hospital!