Molly's Kids: Two siblings, two different, incurable diseases - | WBTV Charlotte

Molly's Kids: Two siblings, two different, incurable diseases

LAWNDALE, NC (WBTV) -

Editor’s note: This is about one of #MollysKids, children WBTV Anchor Molly Grantham follows closely on her Facebook page.  It was first published there – which is why it’s written in a personal way.  For years Molly has followed the stories of dozens of kids with uphill medical battles. Find this story (and updates on all #MollysKids) here: www.facebook.com/WBTVMollyGrantham

Two siblings with two different, incurable diseases. Both are #MollysKids.

Maddie, 12, and Cooper, 7, live in Lawndale, NC.

What big sister Maddie said about WHY it's hard to live with a medical challenge almost broke my heart. Read on....
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Maddie is a rising eighth grader at Burns Middle School. She was diagnosed with Behcet’s Disease in 2013. That’s a rare auto-immune disease that causes inflammation in your blood vessels.

It affects Maddie’s entire body (everywhere blood flows).

Chronic pain, fatigue, migraines, widespread ulcers, GI problems, an inability to walk at times and joint pain are some of what this 12-year-old girl has to deal with.

But none, Mandy says, are more painful than being made fun of because she has this “invisible disease.”

“Invisible diseases are so hard,” Mandi said. “Others cannot see your pain and suffering. I can’t do the things normal 12-year-old girls can, like hang out with friends or even brush my own hair.”

Mom Mandi says Maddie has been in-and-out of the hospital for blood transfusions and was homebound for most of her 7th grade year. She’s on 15 medications.

But Mandi also said there’s only one organ Maddie’s disease can’t touch… her heart.

“I’ve never met anyone with a heart bigger than my daughter’s heart,” she said. “If anything, all of this has made it stronger.”
Maddie will take her Make-A-Wish trip in August. She’s going to Disney World.

(Please send us a picture!)
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Cooper is a rising first grader at Union Elementary.

He was diagnosed with Eosinophlic Esophogitus (EoE) in 2009.

That means Cooper’s esophagus is inflamed making him allergic to basically all foods and environmental allergies. He’s had a feeding tube since he was 22-months-old. Pork and rice are the only things he can eat through his tube.

Cooper can’t go to school consistently and he spends many days at Levine Children's Hospital.

(Mandi said the crew on the 9th floor at Levine has become her second family. It’s where her third child, Olliver, took his first steps while visiting his older siblings.)

Through it all, she said, Cooper smiles.
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That’s why Mandi said she emailed… to share the power of a smile.

“No matter what life throws at you, you can always smile at others,” she said. “It may be the only smile they see.”

Pretty powerful coming from a mom taking care of three kids… two being these beauties you see here. 

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