Downers Grove parents raise awareness about rare diseases

The Northwestern women’s soccer team has befriended Hallie Munro, who is suffering from a number of illnesses. On August 31st, Hallie attended her first NU women’s soccer game and spent time with the girls who have helped her in a time of need.

Like most six-year-old girls Hallie Munro loves pink-- and loves her dolls.

But this is what sets Hallie apart-- every morning Necia Munro administers 18 drugs through a port in her daughter's stomach, mouth and back.

Hallie has what's called Heterotaxy Polysplenia, a genetic syndrome which affects only 4 children in one million.

"It’s very literally a different arrangement of her organs," Hallie’s mother, Necia Munro said, "I think I knew right away that something was wrong because she was that little and she was full term."

Weighing only 4 pounds 8 ounces, little Hallie would undergo her first operation 24 hours after entering the world. She lost half her small and large intestines and has had 35 other surgeries to date.

"There are times when you look at it and say it's not fair. She doesn't get to live a normal childhood. But we've learned that by dwelling on those things it doesn't change,” Necia said.

Escaping the heavy toll of health problems is the job of the Starlight Children's Foundation Midwest. On this day Hallie joins dozens of kids to make their mothers bracelets from jewels donated by Ultra Diamonds.

Joan Steltmann, Executive Director for the Starlight Children's Foundation Midwest said "We really try to focus on brightening their lives. It's about quality of life. We think of this as a wrap around to the medical community.”

Necia wears her daughter's gift on her right arm. It will be there through all medications, doctor's appointments and hospital visits. It is a symbol of love and strength between a mother and her child.

Despite Constant Pain, 6-Year-Old's Love of Life Shines Through

KOLO-8 ran a segment on Hallie for the Golf Tournament:

Hallie Munro is four years old, and suffering from a medical condition that's draining her family's bank account, and puts her in and out of the hospital on almost a daily basis. That's why the Helping Hallie Foundation is organizing a charity golf tournament to help pay for Hallies medical expenses.

Hallie hasn't been able to digest food properly since she was born because her intestines don't work. Multiple surgeries later, and Hallie has three options: 100 percent I-V nutrition, pain management to make her comfortable until she dies, or an entire small and large intestinal transplant that only has a 50 percent success rate.

Hallie doesn't eat much because her body can't digest much of anything except chicken noodle soup. Hallie's mom, Necia, says, Hallie's medical bills are so high, the last one alone was $20,000. But the Munro's choose to celebrate life's little moments, and focus on the positive. While Hallie's energy, love for life, and happy attitude is deceiving, the Munro's know they have to rely on help from others to get through each day.

The charity golf tournament for Hallie is happening Saturday, July 17th at Red Hawk Golf Course in Sparks. Registration ends June 30th. The entry fee entitles you to play golf at the amazing Resort at Red Hawk golf course, followed by a BBQ dinner, auction and raffle. Besides golfing, you can also donate items for the raffle or auction, or sponsor a hole. There are several items that can be donated for the tournament itself. If you are interested in donating or participating, please email golf@helpinghallie.com.

Channel 4 News ran a segment on Hallie throughout the week for the yard sale:

The Reno Gazette Journal had a small blip about her as well.