‘I’m a cystinosis warrior and I can beat it’: Albany school dedicates day to young girl with rare disease

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Published: Oct. 21, 2022 at 5:50 PM EDT
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ALBANY, Ga. (WALB) - West Town Elementary School turned green Friday and dedicated a day to one student who is living with a rare disease known as cystinosis.

”I’m a cystinosis warrior and I can beat it,” Kaedyn Loud said.

Kaedyn was diagnosed with cystinosis at 14 months old.
Kaedyn was diagnosed with cystinosis at 14 months old.(WALB)

She has lived with cystinosis all her life. Cystinosis is caused by the buildup of an amino acid called cysteine.

“It affects 1 in 500 in the United States. She was diagnosed at 14 months,” Lotoya Howard, Kaedyn’s mom said.

The excess of cysteine harms Kaedyn’s body in different ways. Throughout her life, she has experienced constant fatigue, muscle weakness and even kidney problems.

“Her body is not able to filter out, so it forms crystals. Like little stones. It’s more in her kidneys and in her eyes. So sometimes if she doesn’t have the shades on and you’re looking in her eyes, they may look like they’re sparkling,” Howard said.

But despite all that, Kaedyn’s mom said this year has been a great year. Kaedyn just got on the kidney transplant list.

“Just waiting on that call. Just to be able for her to live a normal life. She will never be normal. She will always have cystinosis, but she won’t be as sick as she has been,” Howard said.

Lotoya Howard said her daughter has had a great year battling the disease.
Lotoya Howard said her daughter has had a great year battling the disease.(WALB)

This is also the first year Kaedyn has been back in school and what better way to return to school than with your teachers and friends showing their support?

“It didn’t cost us anything to celebrate Kaedyn today. It was our pleasure to be able to do that,” said Dr. Narkisa Howard, West Town Elementary School principal.

Kaedyn’s friends had no problem getting loud to spread awareness about cystinosis.

“Today, we are celebrating one of our very own students Kaedyn Loud. We want the entire student body, faculty and staff to know about her rare disease called cystinosis,” said Brea Thurman, a student at West Town Elementary School. “It means a lot that everyone is appreciating her.”

Keyonna Washington, another one of Kaedyn’s friends, said they’ve been friends since kindergarten.

“Now I’m in the third grade and I’m still Kaedyn’s friend. Every time we go outside, I make sure Kaedyn is okay,” Washington said.

Students and staff at West Town Elementary School wore green in support of Kaedyn Loud.
Students and staff at West Town Elementary School wore green in support of Kaedyn Loud.(WALB)

Kaedyn’s day was not only a time to celebrate her but also an opportunity to spread awareness.

“It’s very significant for our students to understand what is going on with her and why she wears shades in the building daily. And it helps them to bring more acceptance to Kaedyn,” said Dr. Sinay Edwards, West Town Elementary School teacher.

That acceptance was felt by Kaedyn and her mom.

“She is like everyone else. She’s no different. It’s just that she has some difficulties that may hinder her from doing some things but it’s not that she can’t do them. It’s just that she might not be able to do it at the moment,” Howard said.

Kaedyn’s teachers said she is a walking reminder that you can do anything you put your mind to.

“She’s always persistent in the fact that she comes to school every day, and she just continues to work very hard,” said Raphael Kirby, West Town Elementary School teacher.

That hard work is also seen throughout her fight against cystinosis — a fight she’s battling alongside a huge support system.