Memphis girl faces rare disorder with humor as St. Jude steps in with a cure

Memphis girl faces rare disorder with humor as St. Jude steps in with a cure

MEMPHIS, TN (WMC) - Imagine growing up allergic to the sun, trapped inside while all your friends play outside.

That was one Memphis child’s reality until she got treatment at St. Jude Children’s Research Hospital.

But how she handled the agony of chemotherapy is a social media inspiration.

“It’s like burning from the inside out," said Madelyn Havard.

At just 4 years old, Madelyn was diagnosed with Erythropoietic Protoporphyria, or EPP.

“If she got too much, the skin would swell,” said Polly Havard, Madelyn’s mom. “It could blister and just feel like it was burning for days.”

Exposure to the sun was toxic to Madelyn.

“It was really hard,” she said. “Because I could see my sister go out in the pool in a bathing suit and I’d sit under the umbrella. Or if I wanted to go swimming, I’d have to wear a rash guard and swim tights and swim socks and a hat. And just the looks that people would give...”

Fewer than 10,000 people on the planet have EPP. Less than 5 percent develop life threatening liver disease, but Madelyn did at age 12.

Last summer, she became the first EPP patient to receive a bone marrow transplant at St. Jude. The procedure required 10 rounds of chemo in nine days.

“(It was) awful," said Polly Havard. “She had every side effect you can imagine. It was pretty intense because they have to kill all that bone marrow in such a short amount of time. It was a lot of chemo.”

Madelyn was devastated when her long blond hair fell out, but she opted to rock a brand new look with a new attitude. She created a new Instagram account and dressed up as different characters as her hair grew back.

“It was just like the first time I was having fun with my short hair because I was really sad I had to lose it,” said Madelyn.

Doogie Howser. Will Ferrell in Elf. Justin Timberlake. Napoleon Dynamite. And her favorite, Eleven from Stranger Things.

“Instead of having people look at her and stare, now they can look at her and laugh and have fun and smile with her,” said Polly Havard.

Nine months after her transplant, doctors told Madelyn her EPP is cured.

She celebrated with her mom and dad and twin sister with a vacation under the sun.

“I went to the beach this past weekend and it was crazy,” said Madelyn. “Right when my foot hit the sand I was just smiling and laughing, and it was so fun.”

Her mom said it was amazing to see her laugh and play and step out on the beach with her sister.

Madelyn’s lifetime of covering up is now over, with the sun shining down on her during our interview.

Madelyn and her mom are grateful for the doctors and staff at St. Jude.

“I’m a lifelong Memphian and have run the race,” said Polly Havard. “We’ve done the Dragon boat. We’ve taken tours, been to meetings there and never imagined my child would need treatment there. But it has been the most amazing experience."

As for Madelyn...

“I just, thank you,” she said. “It’s just crazy what they were able to do for me. They changed my life!”

Madelyn still attends school at St. Jude, but next fall she’ll be able to return to Woodland Presbyterian.

Right now, she’s busy planning her next celebrity look-alike picture -- her favorite talk show host, Ellen DeGeneres.

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