MEMPHIS, Tenn. — Seven years ago, a Germantown high school sophomore was diagnosed with a rare disease that left her family wondering if there would be a cure and if a local hospital could treat her illness.
Today, she and her family credit Le Bonheur for her exceptional care.
When you first meet 22-year-old Leeya Alperin or see a photo of her, you can instantly tell she’s a proud recent graduate of the University of Tennessee and you learn she’s a strong, confident, and definitely a one-of-a-kind young woman.
“Everything about me is rare, even the spelling of my name,” Leeya said.
Leeya’s parents, Lon and Samantha Alperin, agree.
“She’s always been vibrant and active, was born talking and has always been very smart, very sassy,” Samantha said.
“She’s a little powerhouse. There’s no doubt, no doubt,” Lon said.
Back in 2016, Leeya faced one of her biggest obstacles when she started having aches and pain, along with stomach problems.
“There were stomach issues and things like that we were checking out that led us down this path and led us to a CT scan. We got a phone call from a doctor who said something isn’t right in this CT,” Lon said.
That doctor told the Alperins to take Leeya to the hospital to find out what was wrong.
“I remember Lon saying to me and I don’t know if you remember saying this to me…he really said at this point I’m just afraid we’re going to lose her,” Samantha said.
As for Leeya, she just wanted to feel better.
“I didn’t care if I lost my hair. I didn’t care if I lost weight. I didn’t care. I just wanted to be cured because I knew something was wrong,” she said.
Leeya would have two biopsies. Her diagnosis would finally determine she had a rare lymphatic condition called Generalized Lymphatic Anomaly, but one of her biopsies also caused another problem.
“In two weeks, Leah ended up with thirty pounds of fluid on her stomach. At 15, she looked like she was nine months pregnant from the fluid,” Lon said.
There was also a setback regarding her treatment.
“We were told that no one could treat us here at first and to have to go someplace else that isn’t local and was very frustrating,” Leeya said.
During their frustration, they found hope when they were told about Le Bonheur Children’s Hospital’s Vascular Anomaly Clinic.
“Thankfully, we got to Le Bonheur. Le Bonheur has a Vascular Anomaly Clinic. Le Bonheur from the moment we walked in there, Dr. Williams and her staff were quick and like okay we’re familiar with this condition and we can help you with this,” Lon said.
The challenge wouldn’t be treating her rare condition, but her rare complication. Leeya was leaking fluid into her stomach from her lymphatic system leaving her parents with questions about her health and her quality of life.
“I asked them. I’ve asked doctors probably three different times…am I going to see her? Is she going to graduate from high school and go off to college and walk her down the aisle? Am I going to hold my grandbaby?” Lon said.
Leeya would be in the hospital for weeks. Throughout it all the Alperins never felt isolated from their team of Le Bonheur specialists who worked to help Leeya deal with her pain, her daily medications, and her treatment.
“They were fantastic. They got the equipment. We had this great interventionalist radiologist between him and Dr. Williams, walked us through everything and finally two days before Thanksgiving were able to leave,” Samantha said.
The Alperins will tell you, it’s been a long road, but more than seven years later, Leeya is doing better.
“It’s been seven years. She has certainly been stable. There’s no reason she can’t have a fantastic life. She graduated from college,” Samantha said. (long)
“She has a bright future,” Lon said.
A bright future that has her wanting to pursue a career in hospital administration. She’s also on a mission of advocacy because of how Le Bonheur impacted her life.
“It pushes me to advocate and to be that voice for people who might not be able to have a voice,” Leeya said.
Leeya and her family are pushing through life with success because of Le Bonheur Children’s Hospital, a hospital that’s one of a kind, just like Leeya and one where every child matters when they come through their doors.
“Seeing the support Le Bonheur gives to the community and seeing the support it gives to families, I just can’t say enough good things about Le Bonheur,” Lon said.
“As a family, we are very blessed that we had the care and that we have our child,” Samantha said.
“Le Bonheur, I’m so grateful for what they gave me and also for them continuing to care for not just me, but all the people in the community,” Leeya said.
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