Ryleigh Lodge

Ryleigh Lodge, who will turn 5 in December, was diagnosed with Focal Segmental Glomerulosclerosis when she was 18 months old.

MOULTRIE, Ga. — Many transplant families are left to shoulder the cost of a life-saving transplant, which is usually upwards of $800,000, but for the Lodge family, that wasn’t an option.

When Shayla and Jonathan Lodge’s daughter Ryleigh was diagnosed with Focal Segmental Glomerulosclerosis (FSSG) at just 18 months old, they requested assistance from the Children’s Organ Transplant Association (COTA).

According to NephCure Kidney International, FSGS is a rare disease that attacks the kidney’s filters, known as glomeruli, which can cause serious scarring that could lead to kidney failure and even prove fatal.

“Ryleigh’s FSGS condition specifically is nephrotic syndrome, which has a collection of symptoms. Hers is a genetic form, where the filters in her kidneys were never formed properly. They leak massive amounts of proteins which causes things like anemia,” said Jonathan Lodge.

The transplant team at the Children’s Hospital of Atlanta, Egleston in Atlanta, Ga., have recommended a kidney transplant in order to remedy this. But where does the money for the out of pocket costs come from?

“We currently have a few fundraising events in the works,” said Meg Goodman, the Public Relations Coordinator for COTA.

As many as 20 to 35 South Georgia volunteers are raising $100,000 for COTA to assist with transplant-related expenses, according to Goodman. COTA assists transplant families with transplant-related costs, such as medication, transportation to and from the transplant center, lodging and expenses that need to be paid while the parents are out of work and living with their hospitalized child, often far from home.

And it helps to have help; among the events planned to raise money for Ryleigh’s procedure is a ladies Paint and Sip night, a skeet shoot, a cake auction and many other events.

“For anyone that’s interested in donations, COTA is a 501-C, so their donations are tax deductible too” said Goodman. “They can contact Kelsi Davis too at (229) 319-3853, or on her website at cotaforteamryleigh.com. They share weekly updates about Ryleigh’s condition on this page, as well as a donation link so that people can donate directly from the website.”

One of the largest events planned is a benefit concert scheduled for Oct. 19 at the Ashburn Hill Plantation called Rockin’ For Ryleigh, featuring local bands and a variety of food trucks for attendees to choose from.

“We probably have about 25 to 30 volunteers, some of that being family friends, and people in the community that have had a hand in offering help and planning these events,” said Goodman.

Ryleigh’s parents are originally from Colquitt County, but their jobs have moved the family to Savannah, but that shouldn’t discourage local donors from donating.

The family does not yet have a match, according to Jonathan Lodge, but they are hoping that he will be a match for Ryleigh.

“We want a live donor rather than a deceased one,” he said, “because it lowers the chance of rejection and the organ will last a little longer.”

“We’ve gotten a lot of questions about our insurance and things like that, and what I would say is that COTA is not a cure. She’ll eventually have to do this again. So each donation counts towards lifelong help for Ryleigh,” said Lodge.

COTA’s priority is to assure that no child or young adult is denied a transplant or excluded from a transplant waiting list due to lack of funds. Anyone who would like to donate to help them accomplish this is welcome.

Lodge had a message for the volunteers helping to raise funds for Ryleigh: “I just want to say, what a relief it is to have your help and not have to worry about things like money.”

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