A Case for a Cure: Aishlyn’s FSGS Journey

Aishlyn Case looks like any healthy 10-year-old, with a full face, long brown hair, and a big, beaming smile complemented by a dimple on each cheek. She acts like any healthy 10-year-old, swimming in the pool in her backyard, binge-watching her new favorite show, and attending virtual fifth grade, where her favorite subject (right now) is science.

But Aishlyn Case is not any healthy 10-year-old. And most people would never be able to guess why.

Tammy Case, Aishlyn’s mother, couldn’t guess why. No warning signs or strange symptoms made an appearance until she took Aishlyn and her two sisters shoe shopping in February, and Aishlyn couldn’t fit into a pair of shoes. It wasn’t because she simply needed a larger size — Aishlyn’s feet were swollen. After further inspection at home, Tammy realized the swelling went all the way up both of her daughter’s legs.

They rushed to the emergency room, and later that day doctors recognized the severity of Aishlyn’s condition. Before they knew it, Tammy and Aishlyn were whisked away in an ambulance, heading straight for Le Bonheur’s Children’s Hospital in Memphis, Tennessee.

“I immediately thought the worst, because her daddy passed away in October from cancer,” said Tammy, her Southern drawl tinged with a mother’s concern.

But the swelling didn’t emanate from a cancer or tumor of any kind, or even an affliction most people are familiar with.

In a hospital room at LeBonheur’s, Aishlyn’s blood test results pointed to Nephrotic Syndrome, a rare and chronic kidney disease. Tammy, like many others, had never even heard of this condition.

Doctors assured her that Aishlyn likely had a form of Nephrotic Syndrome called Minimal Change Disease (MCD) and would quickly go into remission with the help of prednisone (steroids—a medication that suppresses the immune system). The doctors’ confidence in Aishlyn’s uncomplicated prognosis made Tammy feel that her family would simply have to hunker down and get through Aishlyn’s treatment, and then it would all be over.

But the doctors’ confidence was misplaced.

“I didn’t realize the longevity of it,” said Tammy of her initial reaction to Aishlyn’s February diagnosis of Nephrotic Syndrome. “I didn’t realize that this is a forever thing.”

The prednisone didn’t work.

After weeks of treatment without any sign of change in Aishlyn’s condition, doctors deemed Aishlyn steroid-resistant, a label placing her into yet another smaller, rarer, harder-to-treat subcategory of patients. In April, a kidney biopsy confirmed that an aggressive, rare kidney disease called focal segmental glomerulosclerosis (FSGS) was the culprit, not MCD. FSGS is the leading cause of kidney failure in children. To this day, 10 months after her symptoms first appeared at the shoe store, Aishlyn has not yet experienced relief from the symptoms that are causing harm to her kidneys.

“I think I was pretty calm,” Aishlyn said, recounting her first thoughts after learning what disease she had. “But I was thinking in my mind, ‘this was bad.’”

And then in March, just a month after Aishlyn’s diagnosis with a rare, immune-compromising disease, the COVID-19 pandemic halted the world.

In the span of just six months, Tammy’s husband passed away from cancer, Aishlyn was diagnosed with a rare, incurable disease and hasn’t responded to treatments, and a pandemic — to which the immune-compromised are particularly vulnerable — swept the world.

A series of events as difficult as these could quite possibly devastate a family. But the Cases refuse to submit to devastation. Quite the opposite, in fact — this family radiates gratitude and continues to find strength in their faith.

“We prayed a whole lot, and I asked God, if He had to put her on this journey, that He would please be merciful,” said Tammy. “He has been, so we’re just very thankful.”

The Cases are grateful for the chance COVID-19 provided to stay home and stay safe in the midst of Aishlyn’s new diagnosis. The Cases are grateful for Aishlyn’s relatively minor outward symptoms, even though remission continues to elude her.

Physically, she appears healthy. The swelling has subsided and doesn’t continue to plague her as it does other FSGS patients. Since she’s stopped taking prednisone, the harsh side effects that accompany steroids have disappeared. But each of Aishlyn’s lab results show that she is still “spilling” protein from her blood into her urine, causing irreversible harm to her kidneys.

Other than frequent fatigue and Tammy’s eagle-eye watch on her sodium intake, Aishlyn’s life mostly resembles that of any other fifth grader. Even though she may seem healthy, however, the knowledge that her protein-spilling has yet to stop hangs over the family each day.

After Aishlyn’s diagnosis, Tammy scoured the internet for more information and support, and found both in NephCure Kidney International.

“NephCure had the most information that was easily accessible,” Tammy said. “It was just the best by far for me to get information, so I was really thankful for that.”

In July, just a few months after their new normal begun, the Cases participated in NephCure On the Move Summer Challenge — and ended up raising $2,545, the most of any participating team!

“As a mama, I know that I can’t fix my baby,” Tammy said. “But what I can do, hopefully, is raise awareness and funds so that we can find a cure.”

When Aishlyn was last admitted to LeBonheur’s, she said something to her nurse that’s stayed with Tammy ever since. Something that encapsulates the patience and faith that power the Cases through each challenge they face.

“[Aishlyn] looked at that nurse,” Tammy recounts, “and she said, ‘Sometimes, God just puts you on a journey, but I’m going to be okay.’”