Canton girl nicknames kidney after mom | Families
CANTON, Ga. -- March 28 is Lilly Grace's birthday, and it's all made possible by Millie, the nickname she gave her kidney.
Lilly Grace and 6-year-old sister Maggie both have a rare genetic disease called Cystinosis. Their mom pulled out a pile of paperwork to try to explain it.
"We didn't know what it was before Lilly Grace was diagnosed. Most doctors don't. We have to explain it to them," Ashley Haynes said.
The sisters are used to explaining it to other kids.
"I sort of just tell them I have a disease that makes me be sort of different," Lilly Grace said.
"My kidney is worse than anybody else and I have to take lots of medicine," Maggie adds.
It means the lunch boxes that are color coordinated with their backpacks are really medical kits. They have multiple prescriptions they have to take every six or 12 hours.
The timing is critical. "My teacher sets an alarm on the board and then tells me, you have to go take your medicine, and I go to the nurse's office," Lilly Grace said.
It's a disease that used to mean death by 10 years old. That's how old Lilly Grace turns today, thanks to Millie.
"Its name is Millie because my mom gave it to be and my name is Lilly. It's mom and Lilly, which is Millie," Lilly Grace said.
In 2010, when her daughter needed a transplant, Ashley went under the knife.
"You don't even think about it, not for a minute. It's three, four, maybe five days that you might have some discomfort, where somebody else gets a lifetime," she said.
Lilly Grace has big plans for her 10th birthday: "We're going to go pick up all of my friends and get our nails done."
And big plans for Millie's next month, "because Millie is in here and so she can have two birthdays," Maggie said.