This was 15-year-old Kennedy Hubbard’s moment to shine.
It was Aug. 26, and Kennedy, about to enter her sophomore year at Moorestown High School, was celebrating her birthday with a party any teen would envy. Inside the Lenola Memorial Fire Hall, there was a popcorn station, a sweets station, a beverage bar – even macaroni and mashed potato bars. A popular local rock band would be performing live on stage. The guests were asked to dress in black and white.
Kennedy, wearing a sparkling, bubblegum pink party dress and a warm smile, happily greeted some 200 guests.
But this was more than just a birthday celebration.
Instead of the typical room full of partying teens, guests also included a nurse and two doctors who cared for Kennedy as a baby during an eight-month stay at DuPont Children’s Hospital’s Pediatric Intensive Care Unit.
Instead of gifts, attendees brought donations for a non-profit Kennedy founded, Kennedy’s Cause. The organization raises much-needed funds for The Vascular Anomalies Center at the Children’s Hospital of Boston – a place Kennedy has been all-too familiar with throughout her life.
Kennedy was born with a lymphatic vascular malformation – a rare, non-malignant mass consisting of fluid-filled spaces, thought to be caused by the abnormal development of the lymphatic system. The condition leaves Kennedy with a large facial deformity, a tracheostomy and numerous related health complications, including a swollen tongue and difficulty eating and speaking.
The cause remains unknown. There is no cure.
Treatment options are limited, and at times, risky. Kennedy has already been through dozens of surgical procedures in an effort to shrink the mass near her jawline. This month, Kennedy will begin a new drug trial – an anti-rejection drug typically given to organ transplant recipients. It will suppress her immune system, leaving her more prone to infection, and may leave her feeling nauseous at times.
Still, Kennedy is anxious to begin her new treatment, she says. She only hopes not to miss too much school in the process.
For Kennedy, there is no hiding the chronic condition she lives with each day. Everywhere Kennedy goes, she is mindful that strangers may be shocked by her appearance.
So as Kennedy prepared to enter high school, her parents feared the worst – bullying, cruel comments or worse.
“We had been warned very early on that her high school years would be horrific and she would get to the point where she would become depressed and not want to attend,” Leanne Hubbard recalled. “It became my goal not to let that happen.”
So the plan, Leanne Hubbard said, was not to hide. Kennedy wouldn’t just attend high school like any other teen her age. She would be an active, involved, engaged student. Activities that doctors once feared she would never be able to participate in – like high school volleyball – are now part of the routine for Kennedy.
The strategy seems to have worked. Kennedy is a happy, well-adjusted teenager, with good friends and an active social life. Her best friends and volleyball teammates are quick to defend her if needed – but there really are no school bullies to deal with, she says.
Still, when it comes to bullying, Kennedy is aware that she is one of the lucky ones.
“I think (education) has helped them to see her as just another student because they understand a bit better,” Leanne Hubbard said. “A person is judged by their appearance in a split second. So in Kennedy's situation, I think it was very important to try to educate and explain throughout her school years.”
“We always worked very hard … to show everyone that she was just like them,” Leanne Hubbard said. “So far it has worked. She has incredible self-esteem.”
All of Kennedy’s fundraising efforts revolve around one word: shine.
The word, Kennedy says, was chosen to serve as a reminder to let ones inner beauty shine. While raising funds and awareness for lymphatic malformation is important, Kennedy is also striving to send a more personal message.
“Inner beauty is how or what a person is inside,” she says. “Their appearance doesn’t matter. This is important, because all you hear about now in magazines is what people look like, and trends are based on how celebrities and people look.”
So in Kennedy’s spare time – between school, violin lessons, volleyball practice, and countless medical appointments – she hand stamps her own jewelry to sell. Her mother, sister and friends have also gotten in on the act, creating “Shine” bracelets and “Shine” necklaces. T-shirts and “Shine” car magnets are now also available for purchase.
“We want people to realize,” Kennedy says, “that you don’t have to look beautiful to be beautiful.”
At the Sparkle and Shine Fundraiser that also served as Kennedy’s 15th birthday celebration, guests helped Kennedy’s Cause raise a total of $4,400. The family hopes to make Sparkle and Shine an annual event from now on.
For Leanne Hubbard, the party was a reminder of how far they had come.
“During those dark months that she was in intensive care, I don’t think any of us ever dreamed how happy and well-adjusted she would be at 15,” Leanne Hubbard said. “It was even hard to imagine her making it to the age of 15. I can’t think of a better way to celebrate another year then by having a big bash with friends and family who have supported her and continue to support Kennedy’s Cause.”
Kennedy’s goal in 2011 was to raise $14,000 for Kennedy’s Cause – an amount she picked in honor of her age that year, she said. The family was amazed – and humbled – when such a large goal was met.
“We hope that every year she can raise more money,” Leanne Hubbard said. “This year her goal is $15,000. It gives us such hope to be raising funds that will go towards research, teaching and to help other families who are faced with medical challenges.”
But for Kennedy, the cause does more than give her hope that one day she can find a cure – or even just an improvement of her condition.
For Kennedy, Leanne said, the cause has given her a purpose.
“This helps her to feel like we are doing our part to fight this disease,” Leanne Hubbard says. “It has also made her peers more aware of her condition because of the support and awareness the school has shown.
“Our main goal is (raising money) for research,” Leanne Hubbard says. “But for teen girls, we just want to help others. To keep showing how positive she is.”
“If she can get up every day and make a difference,” Leanne Hubbard says, “Why can’t anyone else?”
To learn more
For more information about Kennedy’s Cause or to inquire about purchasing jewelry, visit KennedysCause.com, Facebook.com/KennedysCause or e-mail firstname.lastname@example.org.
Published (and copyrighted) in South Jersey Magazine, Volume 9, Issue 8 (November, 2012).
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