Miami Transplant Institute Gives Young Girl a Second Chance at Life after a Rare Neurological Disease Led to Kidney Failure

By: Krysten Brenlla

At just 5 years old, Emory Crosdale was diagnosed with Joubert syndrome, a rare disease that affects how the brain develops, specifically motor skills, balance, and coordination. Some children with the disease might also suffer from kidney and liver failure – a concern that troubled Emory’s mother, Earldesha.

“Her doctors always told me to keep a close eye,” Earldesha said. “We always went to her annual visits and kept track of her numbers. But when her bloodwork results came back in 2023, everything was off the charts.”

The now 6-year-old was suffering from end-stage kidney failure.

“It felt like it happened overnight,” Earldesha said. “Her nephrologist told me we needed to consider dialysis as soon as possible.”

That same year, Earldesha’s mother was also suffering from kidney failure and receiving dialysis treatments three times a week. Unfortunately, in November, her mother succumbed to the disease – a fate Earldesha didn’t want for her own daughter.

“When I found out that Emory was in this condition, I didn’t know what to think – she’s my baby,” Earldesha said. “I spent so many restless nights praying for her and putting my faith in God.”

Given the state of Emory’s kidney function, Earldesha knew she had to act quickly. On December 26, 2023, Emory had a port placed to start dialysis.

At the same time, Earldesha was calling transplant centers across Florida to give her daughter a second chance at life without dialysis – one of the centers being the Miami Transplant Institute (MTI), an affiliation between Jackson Health System and UHealth – University of Miami Health System.

Immediately, Emory was transferred to MTI and Holtz Children’s Hospital at Jackson Memorial Medical Center.

“Emory’s kidney failure needed urgent treatment,” said Jayanthi Chandar, MD, a pediatric nephrologist at Holtz Children’s and MTI. “Earldesha had the instinct to save her child at all costs.”

When she arrived at MTI, the team worked with Emory to prepare her for a kidney transplant. Almost immediately, she was placed on the national waitlist, and within seven days, she received a call for her first match. Although the kidney didn’t work out, the team continued to work toward finding Emory’s donor.

Two weeks went by, and Earldesha got another call – there was a match, and this time, it was viable. In April 2024, Emory received a kidney transplant.

Three months post-transplant, Emory suffered a complication – she developed high blood pressure and her kidney function was down.

“We discovered that the renal artery, which goes into the transplanted kidney, became narrow, causing the kidney to have low blood flow,” Dr. Chandar said.

The MTI team acted quickly by placing a stent, or a tiny, flexible tube that’s placed in the artery to open it up, helping blood flow to the kidney properly.

“It was remarkable – the kidney function and blood pressure improved drastically after the stent placement,” Dr. Chandar said.

Emory spent two weeks in the hospital recovering from the stent placement before she was ready to go home. Her numbers stabilized, her urine was flowing, and the kidney was functioning.

“Emory is a spitfire, a feisty little person – we always say that she’s so strong and has proven her strength in more than just the physical,” Earldesha said. “I’ve never seen anything like it – that’s what kept me going. There wasn’t a day I’d feel like giving up, because nothing ever phased her.”

Today, Emory is back at home. Although she needs a feeding tube to control her hydration and help with medication intake, she feels like herself again – an old soul who loves music and dancing…

“We’re working on getting some normalcy back into her life, like going back to school and participating in activities she loves. That’s all I want for her,” Earldesha said. “There aren’t enough ‘thank yous’ in the world for the Jackson team and the donor family for helping us get to this point.”