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Mended Little Hearts works to raise awareness about congenital heart defects

Tanja Moody • Feb 7, 2013 at 11:36 AM

"Normal is just a setting on your dryer."

That’s a sentiment that Agnes Rhodes understands well. She’s a homeschooling parent, currently raising six children with her husband Lonnie. The couple raised their four children years ago before fostering and adopting several more children.

But it wasn’t until they began fostering their 12-year-old son Andrew when he was 5 that they learned firsthand about congenital heart defects. Congenital Heart Defects affect almost one in every 100 babies born in the United States, according to Johns Hopkins Medicine.

"I had no idea about any heart defects until Andrew," Agnes said. "But I learned. Any other person cannot imagine. Right now seems like a normal day. But you really don’t have a normal day."

Rhodes, the coordinator of the local Mended Little Hearts (MLH) chapter in Johnson City, undergoes a daily balancing act to achieve some kind of "normal." Andrew has Hypoplastic Left Heart Syndrome, which means thatparts of the left side of his heart did not develop completely before his birth. He’s had three surgeries since his birth that have patched up his heart, Rhodes said.

"The long-term outlook doesn’t look good, the doctors say, but only God knows," Rhodes said. "We’re crossing bridges one at a time."

Daily medications are a must and the whole family gets an annual flu vaccine in an effort to protect Andrew’s immune system. He drinks plenty of fluids and they watch his diet, sticking to low-salt meals. And while he loves sports, Rhodes said, Andrew can’t play contact sports. The decision to homeschool wasn’t made because of Andrew, but he has benefitted by being away from the seasonal illnesses that are passed among children in school settings.

"We can’t put him in a bubble. And we can’t focus on the bad," Rhodes said. "We try to take each day, live it, and make the most of it. We want to make each day the best day that we can for each of our kids."

While he may be limited in sports, Andrew shines in other areas. He’s artistic and he loves to cook, swim and fish, his mother said. He enjoys memorizing Bible verses in Awanas at church. And when he’s able, he goes to summer camp at Bob Hartley’s Camp Mountain Heart in Ripley, W. Va.

Rhodes’ learning about her son’s heart condition is what led her to Mended Little Hearts in 2009. MLH is a non-profit, national organization, born out of the Mended Hearts support group for those who have heart disease. Mended Hearts started almost 60 years ago, and Mended Little Hearts began in 2004. MLH currently has 61 support groups in 24 states. After Rhodes became involved with MLH, the director at the time she joined moved away and Rhodes became the coordinator in 2011.

"We really started over then," Rhodes said. "Now we have about 20 families that are members. We want to reach families that don’t know about our support group, letting them know that they are not alone on this journey with their child. They have a support system."

Members don’t always have a personal connection to congenital heart defects either. Some are nurses, teachers or college students; others are neighbors and friends.

"I just try to get the word out and teach people about heart defects," Rhodes said.

To help, she called the mayors’ offices of each of the local Tri-Cities beginning in the fall to urge them to sign a proclamation locally recognizing Congenital Heart Defect Awareness Week, which is Feb. 7-14. All three mayors agreed.

Rhodes also routinely visits local health fairs where she distributes red bags filled with coupons and information about MLH and heart defects. Last month, MLH hosted a cornhole tournament fundraiser in Bluff City, which Rhodes said she hopes to do again in the future.

"Any money we raise goes to help local families when they take their child to Vanderbilt for a surgery," Rhodes said. "We can never raise enough to help pay medical bills, but we help pay for gas or lodging."

MLH meets the third Tuesday each month from 6:30 to 8 p.m. in Room A at the Wellness Center on 200 Med Tech Parkway in Johnson City. Childcare is provided and membership is free.

For more information, call Agnes Rhodes at 423-676-8352 or Ashley Ollis at 423-557-7743. Or visit http://www.mendedhearts.org/ or "Mended Little Hearts Johnson City Tenn" on Facebook.

To make a monetary donation, send a check to Mended Little Hearts, 359 Rhodes Private Drive, Piney Flats, TN 37686.

Upcoming Events

* Because congenital heart defects affect nearly one in 100 births in the United States, Mended Little Hearts will host a "1 in 100" Balloon Launch at 10 a.m., Saturday, Feb. 9, at Mountain View Baptist Church, 4005 Bristol Highway, Johnson City. The Mountain States Mega Heart will be at the event for people to walk through and see all the different parts of the heart. Cinnamon bread, muffins, juice and coffee will be served, and fun activities are planned for kids.

* Another "1 in 100" Balloon Launch will take place at 4 p.m., Saturday, Feb. 9, at Oak Hill Funeral Home, 800 Truxton Drive, Kingsport.

* A third "1 in 100" Balloon Launch will take place at 2 p.m., Sunday, Feb. 10, at Common Ground Church, 2844 Highway 11E, Bristol (across from Bristol Motor Speedway). The Mountain States Mega Heart will also be at the event for people to walk through and see all the different parts of the heart. Fun activities for the kids are planned, and refreshments will be served.

* Blood Drives will be held the week of Feb. 7-14 at each of the Marsh Blood Centers. Anyone donating at either location can mention they are there for Congenital Heart Defects and Mended Little Hearts.

* A MLH fundraiser at Fro Z Yo, 3211 Peoples Street, Johnson City, will be held from noon until 8 p.m., Feb. 9. Customers simply tell employees at Fro Z Yo that they are there for Mended Little Hearts so MLH will receive a portion of the sales.

* Ci Ci's Pizza, 198 Market Place Boulevard, Johnson City, will be selling Mended Little Hearts during February for a fundraiser that will enable MLH to help families traveling out of town when their child may require more surgeries.

All of the events are open to the public.

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