MAHOPAC, N.Y.— Like many kids his age, Connor Looby, a 10-year-old Austin Road Elementary School student, is a sports enthusiast and aspiring athlete. He plays lacrosse in the Mahopac Sports Association and basketball for St. John’s CYO.
But Connor suffers from a disease known as lymphedema, caused by an abnormality in the lymphatic vessels, which results in an accumulation of fluid in the affected area. Sufferers are also more prone to skin breakdowns, infections and swelling.
“It can cause problems with everyday activities,” said Connor’s mom, Jennifer Looby. “It can be harder for [Connor] to walk and keep up with children his age.”
Still, Connor is determined to live the life of a normal kid.
“He is very active; he defies the norm,” Looby said. “He is not as fast [as his teammates] and tires more quickly. Normally, children like him aren’t as involved. He has to get treatment every day. He makes us worry but he does it and he survives.”
March is Lymphedema Awareness Month and as chair of the New York Chapter for the Lymphatic Education and Research Network (LERN), Looby is on a mission to raise awareness of the disease.
According to the National Organizations of Rare Disorders, lymphatic malformations, such as Connor’s, occur in one out of every 4,000 live births. LERN says up to 10 million people worldwide are affected with some form of lymphedema. Like Connor, one can be born with the abnormality (primary), or it can be caused by trauma or post-surgery (secondary). Doctors don’t know why.
Looby said the cause is unknown because there has been minimal research.
“It flies under the radar,” she said. “It feels like an uphill battle at times. When I explain it to people, they are like,‘what?’ They’ve never even heard of it.”
Looby said that within a week after Connor was born, she and her husband could see the swelling in his legs.
“It was affecting his leg and his intestines and he started vomiting,” Looby said. “We went back and forth with local doctors and they couldn’t figure it out. Then we took him to Marie Fareri Children’s Hospital.”
The hospital admitted him when he was six-weeks old. They kept him for six weeks and did every test imaginable, Looby recalled.
“They figured it out,” she said.
Looby immediately began researching lymphedema.
“I didn’t know anyone who had it…we did a lot of research to get him to where he is now,” she said. “He had to go on a very specialized diet. He couldn’t have fats—at least no long-chain fats like fried foods or bakery treats. He can have medium-chain fats like coconut oil, avocados.”
Of course, that rules out McDonald’s, but Connor can’t miss something he’s never had.
“He knows if he eats it, it will make him sick and he doesn’t want to be sick,” Looby said.
The swelling in Connor’s legs is permanent, but it can be controlled through compression garments and bandages, and regular massages. Fortunately, his mom is a licensed physical therapist.
“I do the massages,” Looby said. “I got certified in lymphatic message. I even reached out to some of my old professors and asked if we ever learned [about lymphatic message] and they said, no, we don’t teach that.”
So, the Loobys are doing their best to raise awareness of the disease and get legislation passed that will make insurance providers take notice. In 2012, Connor was named the first-ever ambassador for LERN.
“He’s been writing to legislators and trying to get the Lymphedema Treatment Act passed in Congress,” Looby said. “That would require insurance companies to pay for therapy and compression garments. Right now, they don’t pay for any supplies and just limited therapy.”
March 6 was Lymphedema Awareness Day in New York.
“Connor has been up to the [state] Senate floor numerous times,” Looby noted. “And he has met Rep. Sean Patrick Maloney. He’s (Maloney) approving of [the bill] and a cosponsor.”
Connor told Mahopac News that he just wants to be a regular kid.
“[The disease] really doesn’t matter,” he said. “Sometimes my leg hurts. Some of my friends know I have this problem but I don’t ask for help.”
He takes his role as ambassador in stride and admits, “I don’t like to give speeches.”
He’s participated in a Lymphedema Walk, which he says he enjoys because he knows it will help other kids going through the same thing he is. To raise money for research, he and his mom created T-shirts and sell them online.
He gets teased sometimes for having to wear compression stockings, but his mother believes once people learn more about lymphedema, that will end.
“One of my biggest goals is to end the teasing and have people accept him for who he is, whether he has to wear compression [garments] or not,” his mom said. “It’s slow, but we’re getting there.”