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What is lymphatic malformation? Woman details growing up with condition

Kennedy Hubbard lives by the mantra, "curiosity is OK; cruelty is not."
/ Source: TODAY

Kennedy Hubbard looks different than most 20-somethings. “We’re well aware of how she appears,” Kennedy’s mom, Leanne, said. “It’s human nature to stare. It’s just not something you see all the time. Curiosity is OK; cruelty is not. Ask questions."

Kennedy was born in 1997 with a rare condition called lymphatic malformation (LM). A mass of fluid-filled cysts surround her mouth and jaw, despite surgeries.

Kennedy was 6-months-old when she had a tracheostomy.Courtesy of Leanne Hubbard

“Some LM parents choose to home school because they want to protect their kids,” Leanne said. “But we wanted to push Kennedy into the public eye and give her as normal a life as possible.”

If you ask Kennedy, it was one of the best decisions her mom and dad ever made.

The 22-year-old from Moorestown, New Jersey, still remembers the day a nurse came to her kindergarten class and explained that lymphatic malformation is not contagious. “We talked about my facial difference and how differences are good and make us unique,” Kennedy told TODAY Health. "I always had lots of friends. I loved school."

What is lymphatic malformation?

Lymphatic malformation occurs when lymphatic vessels do not form appropriately during pregnancy. According to the National Organization for Rare Disorders, the malformations are rare, non-malignant masses consisting of fluid-filled channels or spaces thought to be caused by the abnormal development of the lymphatic system. It affects approximately 1 in 4,000 newborns.

“The head and neck is the most common location but it can occur anywhere on the body,” Dr. McCormick, medical director of the Vascular Anomalies Center at UPMC Children’s Hospital of Pittsburgh, explained.

Some cases are mild and are only recognized when a young child develops an infection or complication within the lymphatic malformation lesion, which causes it to increase in size. But some cases, like Kennedy’s, are so severe that they are diagnosed prenatally and require a tracheostomy (a procedure to create an opening in the neck, to place a tube to allow air to enter the lungs) because of where the mass is located.

Kennedy had a critical airway and wore a tracheostomy tube until the age of 19. But that didn’t stop her from playing high school volleyball.

Kennedy Hubbard wants people to know her lymphatic malformation doesn't limit her abilities.Courtesy of Leanne Hubbard

“Somehow, I did it,” Kennedy said. “My coaches applauded me for being able to keep up with the rest of my teammates, which was the best feeling. I’m all about showing people, ‘I can do exactly what you can do.'"

Kennedy, a setter (one of the most important positions in volleyball), would go on to play college volleyball at Stockton University in New Jersey. While juggling a heavy course load and hanging out with her friends, Kennedy also devoted countless hours to her charity, Kennedy’s Cause. The Hubbards launched it in 2012 to raise awareness and much needed funds to support research for better treatment options. The nonprofit provides support — both emotional and financial — to families affected by lymphatic malformation.

“Kennedy has such a positive attitude,” Leanne said. “She wants to set an example for other LM kids and show them, ‘You can do this.’”

Kennedy has certainly been an inspiration for Victoria Silvestri. Her 17-month-old son, Gavin, has Lymphatic malformation and needed a tracheostomy at birth. The toddler receives radiological treatments called injection sclerotherapy to shrink the cysts on his face and neck. He’s also had plastic surgery.

“Stories like Kennedy’s give me so much hope,” Silvestri, who is a teacher in Jacksonville, Florida, told TODAY Health. “I know Gavin is just as strong as Kennedy.”

Kennedy, who graduated in May with a degree in psychology, knows how far she has come. She is currently interning at Nemours/Alfred I. duPont Hospital for Children in Wilmington, Delaware, where she spent 8 months in the pediatric intensive care unit as an infant.

“I’m back 22 years later with my ID badge,” she reflected. “It’s been a really cool full circle experience.”