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Community Corner

For the Love of Lily

Saturday, Canton will rally around a young girl with a rare disease.

There are still lots of good people in the world. Just ask the family of Lily Haynes.

Lily, 7, was diagnosed with a rare disease called cystinosis when she was 18 months old. Cystinosis is a genetic disorder that causes the buildup of amino acid crystals in the body, particularly in the eyes or kidneys. 

Before her diagnosis, Lily was very sick. She vomited daily and stopped growing for nearly a year. Her parents took her to several specialists, including an endocrinologist who first diagnosed her with Bartter syndrome, a disorder that causes the body to remove too much sodium and potassium through the body through the kidneys.

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"She was growing fine and she felt OK," said Ashley Haynes, Lily's mother. "But when she turned four, they [doctors] noticed some things were looking funny on the bloodwork."

If that was not enough, Haynes’ other daughter was diagnosed with the disease, too.

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"There is a lot of time involved in both of their illnesses," Haynes said. "Any time we take them anywhere, we have to have an explanation of the medication. We had to have liquid medications that involved syringes."

Maggie, 4, hasn't experienced the severity of illness that Lily has.

"Lily was getting upset hearing about the results of her lab work," Haynes said. "Maggie’s are all good and hers are not."

Ultimately, all cystinosis patients require kidney transplants. Though Maggie has had minimal symptoms, the family knows that she will require a transplant once she reaches her 20s. 

Lily’s time is coming much sooner. Her mom is donating a kidney to her the week after Easter–a $45,000 procedure.

Haynes, a teacher at , was hesitant to ask for help.

"I don’t know if I could ask if I had to," she said. "That’s not my personality. Even if we don’t plan on fundraising, people will want to help."

After hearing about Lily’s condition from a friend, Nichelle Stewart responded. Stewart, the vice president of the Free Home PTA, took the lead by organizing a fundraiser for Lily, a first grader at the school.

"This hopefully wonderful benefit is called, 'Love for Lily,' " Stewart said.

Scheduled for 6 p.m. Saturday in the Free Home gymnasium, the benefit will feature Vicky and the Rocket Men, a musical group that includes school secretary Vicky Wheeler, current principal Jonathan Hall and former principal Les Conley.

Attendees will also be treated to assorted goodies: freshly popped popcorn, ice cream, barbecue and more. All proceeds will go to the Children’s Organ Transplant Association (COTA), a nonprofit organziation that is raising funds for Lily's transplant expenses. The Haynes family is nearly halfway toward its $45,000 goal.

"We were shocked by the community support we have gotten," Haynes said. "There isn't a way for people to know how grateful we are. Though I don’t like attention to be brought to us, I am so grateful. You don’t realize how kind and generous people are."

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