Southern Indiana girl immune disease

SHEPHERDSVILLE, Ky. (WDRB) -- A southern Indiana girl is in the fight of her life with one of the rarest diseases in the world – but it’s her strength that is inspiring others.

Like most 2-year-old girls, Kinsley Stephens has a feisty attitude and wants everyone to know it. But the New Albany girl is fighting a battle only 55 people in the world have fought.

Kinsley was diagnosed with Immunodeficiency Centromere instability, also known as ICF Syndrome, which means she has no immune system.

Her parents didn’t know it until she got a cold when she was three months old.

“It had developed from the rhino intro virus to all the way up to spinal meningitis before we were able to diagnose the fact she did not have an immune system,” Kinsley’s dad, Michael Stephens, said.

Since then, their lives have been filled with three weekly injections, fusions, and hospital visits, with the medical bills piling up.

Family, friends, and those in the community met at the VFW Post in Shepherdsville for a classic car show and benefit for Kinsley on Saturday.

“We’ve tried to spread the word on social media and through friends and places of employment ... just any way that we can,” said Kinsley’s aunt, Crystal Branch, who also organized the fundraiser.

All of the money raised from raffles, food and vendors went to Kinsley’s family to help cover medical costs.

Her parents will need to quit their jobs so she can continue her next stage of treatment – a bone marrow transplant.

“At which point we will have to move to Cincinnati for about a year, (because) she has to stay within 30 minutes of Cincinnati Children’s where she is going to have the transplant taken,” Stephens said.

For Kinsely, the past year has been nonstop with tests, surgeries, biopsies, and tubes, only leaving her home to go to the hospital and special events like Saturday’s car show.

She has already proven she is a fighter – her parents say every day is a miracle.

“Her first steps, her starting to talk. These are ... for a long time we weren’t sure if she would ever make it to that point,” said Stephens.

The benefit also served as celebration of how far little Kinsley has come, and the faith others have of how strong she will continue to be.

“It’s an incredible feeling," Stephens said. "It’s reassuring. It doesn’t take all the weight off our shoulders but it does an enormous ... it makes a big difference."

Kinsley and her family will head to Cincinnati on Wednesday for the first stage of her bone marrow transplant.

Another fundraiser is planned for the family on May 19 from 2-6 p.m. at Valley View Golf Club in Floyds Knobs.

Follow Kinsley’s journey on her Facebook page by clicking here. A GoFundMe account was also set up for Kinsley's family, which you can visit by clicking here

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