Special bonds help Lesley thrive with an abnormal heart and right lung
Lesley and Ashley Perez aren’t just twin sisters, they’re best buds. They both love painting and playing with their brother. But they’re by each other’s sides for the hard stuff too.
Lesley was born with an abnormal heart and right lung. Her medical journey has included numerous surgeries and countless office visits to medical specialists.
Complex health needs can’t steal Lesley’s zest for life
“At birth, her heart had too many chambers – a condition called cor triatriatum – that made it difficult for blood to move through her heart and out to her lungs. In addition, the blood vessels that normally return oxygen-rich blood from the lungs back to the heart connected in the wrong place, known as total anomalous venous drainage or TAPVD, and some vessels were too narrow or blocked,” said Dr. Tiffany Kimbrough, the girls’ general pediatrician.
As a result of these rare conditions, Lesley’s right lung is small and prone to infections and she needs supplemental oxygen on a daily basis. She also suffers from seizures and hearing loss.
“None of this has slowed Lesley down,” added Dr. Kimbrough. “She lives life in big ways.”
Marisa Cosco Taylor, Lesley’s social work case manager through CHoR’s Central Virginia Care Connection for Children, agrees with Dr. Kimbrough.
“Lesley is the sweetest girl who is quiet yet thoughtful and very affectionate. She has a huge heart and loves her twin and mom so fiercely. She makes you work for her trust but once you get it, it is so worth it,” said Marisa.
While Lesley is more reserved and quiet, Ashley is enthusiastic and talkative. Lesley’s favorite animal is a dog – Ashley’s is a cat. They complement each other perfectly.
“These two are joined at the hip. I see a huge difference in Lesley when Ashley is with her. They really lean on each other and the bond is quite clear,” Marisa continued.
Care that extends beyond medicine
Lesley and Ashley primarily speak Spanish at home, but they continue to expand their English too and love interacting with friends and classmates. At CHoR, the family uses our language services to make sure all communication can take place in their preferred language. Not only do our interpreters and translators convert words from one language to another, but they provide the context, nuance and intuition needed to ensure authentic communication and that important messages are accurately conveyed. This is one of the ways we make sure all families receive the same level of care.
While Lesley leans on Ashley, the family also leans on Marisa for support with care coordination, which includes navigating appointments, maintaining communication, securing medical equipment and medications, and more.
“When kids have complex medical needs like Lesley’s, there are a lot of moving parts in their health journeys. Care coordination is an essential component in ensuring they get the comprehensive, outstanding care they need and deserve,” said Dr. Kimbrough. “Marisa works closely with me, along with Lesley’s specialists, language services and others throughout CHoR to organize and streamline the process. Families have a lot on their plates already – we’re here to help.”
In addition to coordinating Lesley’s medical care, Marisa works with the girls and their mom, Ana, to help them get the school support and community resources they need to thrive in all areas of life.
“Lesley is a fighter. She’s resilient and strong and I attribute that to the role her mom and sister play. Her mom is also a fighter. She is affectionate, attentive and always advocates for her girls,” added Marisa. “Not only are these girls the sweetest, they are funny, kind and really appreciative. They brighten my day whenever get to see them in clinic or at school (pre-COVID). And I love that they made me earn their trust. I love a strong girl and they embody that.”
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