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Addi now has a full functioning heart

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Addi Byers is an 11-year-old sixth grader at Thomas Jefferson but she is far from a typical young school girl. Her mother, Melanie calls her a "heart warrior."

On March 15, the petite red-head underwent heart transplant surgery at Levine Children's home, Atrium Health in Charlotte and since then and for the first time in five years, Addie has a "fully functioning heart."

Before her surgery she had very little heart function due to a genetic heart defect and was in the hospital weeks before her transplant. (Her little brother Grady also has the same defect but he responded well to medicine as a baby.)

Since coming home, Addi is limited to visitors other than close family because she has no immune system. That will improve with time, but for now she's with her mom, grandmother, siblings, Rylee and Grady, and other close family.

"It is crazy to think of all the things I've been through," Addi said recently to her community of supporters on a Facebook video.

She said she made many new friends at the hospital including the nurses referred to as "angels."

Addi said God answered her prayer when she needed a miracle.

"He provided everything I needed that I didn't even know I needed...He has good plans for me," she said.

Her mother has encouraged her to ask "why not me?" rather than "why me?"

"I have experienced God in so many ways," Addi says.

While still in quarantine, Addi said she loves making arts and crafts, especially creating with "slim" something her mother didn't allow for hours at a time, before surgery.

Her daily routine includes taking medicines at 9 a.m., doing her school work and playing on her Nintendo switch. She also takes walks with her Nana (Luann Butler) and her new puppy Milo.

On warm days Addi can be found laying on her trampoline with Milo and she gets an occasional visitor who waves at her through the windows. She also listens to music, does some Amazon shopping and eats a lot of food, her mother said. At 9 p.m. she takes her evening meds and then to bed.

"We have to be very strict with all the medicine," Melanie said. She said it's a balancing act as some of the meds have side effects, yet she must take them.

Since coming home on April 1, Melanie has returned to the hospital twice for heart caths and tests revealed she has zero rejection of the new heart.

As the mother of an 11-year-old heart transplant is sometimes overwhelming.

"I become very humbled that God chose me to be her mom. He knew we would be facing this together and He put us together because He knew we would both need each other. This journey has taught me deeper that God is the one in control and I know that I can trust His plans for my children," Melanie said.

"Her cardiologist that we grew very close to came to me and said, 'She has a fully normal functioning heart'. "He said that sentence very calmly like it was nothing, but I made him stop and say it a few more times. For almost five years he's told me how low functioning her heart was, so I wanted to soak all those words in. I was on cloud nine," said Melanie.

Melanie said surgery has left Addi with has some food restrictions.

"She will never be able to eat pomegranate or grapefruits again. A lot of people wouldn't really mind this, but grapefruit has always been one of her favorites. We also have to be very very careful with the foods she does eat: not a lot of sugar/carbs, lots of water, no cold sandwich meat, no cross-contamination when preparing foods, and no deer meat. Addi loves deer cubed steak and deer jerky, but the only way she can eat this is if the deer is prepared a certain way...This stuff makes me so nervous to ever let her eat anywhere but home, a balancing-act," Melanie said.

Melanie has gone back to work as a teacher at Thomas Jefferson grammar school and is glad to be back with her students. While working, Nana cares for Addi. She retired in January just in time to be a primary caregiver for Addi.

Melanie and Addi and the other family members hope to see the heart donor's family some day.

"We know a little, but we are not revealing at this time out of respect for the process," said Melanie. "We will be able to write a letter to the donor's family soon. They will be able to respond if they wish to and hopefully we will be able to meet them. I would love nothing more than to hug them tight."

Addi is hopeful that we can meet them because she wants them to listen to her heart with a stethoscope.

"I've heard of people recording the heartbeat and putting it in a stuffed animal to give to the family. I would really like to do something like that for them too. I pray every day for them and hope they are finding peace and comfort. I am forever grateful for the donor's willingness to be so giving. We will never be able to repay them," said Melanie.

"Just know God has been good to us in countless ways. Being a mom used to be about me and my desire to have kids and take care of them. I was way off base, being a mom is about serving God with the most precious gifts and I'm so thankful for all three of mine! They are strong, brave, beautiful and resilient. I pray they always grow close to the Lord and experience who He is," she said.

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