Six-year old Hallie Munro of Downers Grove has a love of life well beyond her years. Her enthusiasm, spirit and contagious laugh belie the turmoil her small body endures.

“It’s like she understands that life is a gift,” said her mother, Necia Munro.

Hallie was born with heterotaxy syndrome, a rare genetic disorder characterized by the misplacement of organs.

“It’s easier to say what she doesn’t have wrong with her than to list what is wrong,” said Munro. “Her gall bladder and kidneys seem to be fine, but pretty much everything else seems to be affected.”

Internal Organs Mixed Up

Hallie’s heart is rotated almost 90 degrees and is located in the middle of her body. She has five spleens, asthma, arthritis, a compromised immune system and suffers from debilitating migraines. She recently had surgery for a tethered spinal cord and a fatty tumor at the base of her spine, and is also recovering from separate incidents of pneumonia and a staph infection. Hallie’s biggest issue to date has been severe abnormalities of her intestines which have resulted in multiple surgeries including an experimental bowel lengthening.

Heterotaxy syndrome is very rare.

“So little is known about her condition,” said Munro, who added that its incidence is thought to be four in one million births. “There’s not a huge survival rate. Typically you have so many huge birth defects that are insurmountable that many of the children don’t make it past age 1.”

Munro believes most, if not all, of Hallie’s physical issues are directly related to heterotaxy syndrome, but there’s nothing conclusive to tie everything together because of the condition’s rarity.

“I can’t tell you how alone we feel with this,” she said.

“Most doctors can’t fathom that there can be so many things wrong and she can still look normal. She can skip up and down the street on a good day. She looks normal. She comes in singing and dancing,” she said.

On days that aren’t so good, Hallie is often in the hospital or homebound. She sometimes relies on a wheelchair.

“We have no idea what determines whether she’ll have a good or bad day. There are so many different things that could go wrong,” her mother said, citing bowel issues, arthritis flare-ups, infections and asthma attacks.

Hallie Learns She's Different

Until Hallie entered kindergarten this year at Pierce Downer School, she was somewhat secluded because of her health issues. She was largely unaware how different her life is from her peers'.

“For the first time now, she’s trying to figure out, ‘Why her?' Before this she didn’t have a lot of friends. Once she started school, she had the realization that not all kids are sick like her. Not all kids deal with pain. She’s in pain on a daily basis. She understands that she’d different. How do you fit into a world when yours is based on medicine and theirs are based on playing dolls and chasing butterflies?” said Munro.

Hallie’s health affects lives of the entire family, including her two brothers, Carson, 9, and Tucker, 3.

“It’s a challenge, trying to juggle three kids and their different needs, especially when Hallie’s needs are so immediate and demanding,” said Munro. “Nothing can be set in stone in our life. If we say we’re going to be doing something, it’s with an addendum that it depends on whether or not Hallie is feeling well enough,” she said.

This is hard on Hallie’s brothers.

“Tucker is very nurturing and caring of her. But since October, he’s going through severe separation anxiety. He doesn’t want to go to school and doesn’t want to ride in the car with other people. He’s going through a phase where it’s difficult. He understands that mom can’t always been there and he’s not loving it,” Munro said. “Carson struggles and has resentment at times. He questions why we can’t do things as a normal family. But he’s very protective of her.” “

As for Hallie, Munro said, “She’s a trooper. She’s amazing. She hates this, and fights me tooth-and-nail about things. There’s a lot of misery, but she’s the first to laugh and the first to find joy in every little thing. She has her own little feisty attitude. It’s like she’s decided: ‘If I have to do this, I’ll do it my way.’”

The family has insurance, but Munro said, “We can’t pay off previous medical bills before we start getting new ones. Pharmacy bills alone can range from $700-$3000 per month. The hardest thing is knowing it’s going to happen again. She’s going to be hospitalized, going to have surgery.”

The Helping Hallie Special Needs Trust was created to help with the family’s mounting medical expenses, as well as equipment and other items that help improve Hallie’s comfort and quality of life.

Donations can be made to the Helping Hallie Special Needs Trust, 4928 Middaugh, Downers Grove, IL 60515. For additional information visit www.helpinghallie.com.