Lily, 7, daughter of Ashley and Jerry Haynes of the Clayton community, suffers from cystinosis, a rare genetic disorder that impairs growth and leads to organ complications.
But thanks to the new kidney, which was donated by her mother, Lily is expected to lead a more normal life.
“This morning she got up and was walking around. She wanted to go to the playroom and play with the toys,” said Mrs. Haynes in a telephone interview Monday afternoon from Children’s Healthcare of Atlanta at Egleston, where Lily is recovering. The surgery was performed March 26. “She is ready to go home and get back to her life.”
Mrs. Haynes said she expected Lily to be released from the hospital by the week’s end; however, she faces four to six weeks of recovery. Mrs. Haynes has recovered and was released earlier this week.
The struggle will never be over. Cystinosis has no cure and Lily, who was diagnosed in 2007, faces a lifetime of medication and doctor appointments. Also, transplanted kidneys have an expected life span of about 15 years, she said.
Additionally, Lily’s younger sister, 4-year-old Maggie, was also diagnosed with the disorder. She was diagnosed at a younger age than her sister so her cystinosis is being controlled with medication. However, doctors expect she will need a kidney transplant when she reaches her teens.
But the Haynes family has a support system that spans Cherokee County.
Earlier this year, after word spread of Lily’s condition and impending surgery, businesses and organizations around the county, such as the Academy of Dance Arts in Canton, where Lily takes dance lessons, began fundraising to help neutralize medical expenses.
At the forefront of the effort is Free Home Elementary School, where Lily attends first grade and Mrs. Haynes is a kindergarten teacher.
“We became aware of Lily’s need of the surgery early in the school year, and when we found out Ashley would be the donor we just knew, as a
school family, we had to help,” said Free Home Elementary School Counselor Susanna Brooks.
On March 19, the school organized a “Love for Lily” benefit concert and silent auction, which raised more than $22,000.
The money, which will go solely to Lily’s medical expenses, is being managed by the Children’s Organ Transplant Association, a national group that helps organize fundraising efforts to support the family of children in need of organ transplants.
Before the surgery last week, Mrs. Haynes said more than $50,000 has been raised. The fundraising goal was $40,000.
Donations are still being accepted through the Children’s Organ Transplant Association website and at Free Home Elementary School.
The school is also selling “Love for Lily” T-shirts for $10 each, as well as “Love of Lily” pencils and car magnets.
With the school year coming to a close, Lily and Mrs. Haynes will not return to the class room until August.
“It was a tense couple of days,” Ms. Brooks said. “But now it is a mood of optimism and answered prayer.”
Mrs. Haynes could not give the exact cost of the surgery, but said the majority of the expense would be covered by the family’s insurance plan. Now, the unforeseeable future costs, such as medications, doctor visits and therapies have been wiped away with the help of strangers.
“This is amazing,” she said. “We didn’t expect anything but the burden we were told we would face after the transplant is no longer a burden. This has been uplifting for [Lily] and her family.”